8 • 2019 • developmental observer aims for premature and full term infants who need help from a ventilator for breathing, it can be difficult to hold the infant skinto-skin and often depends on the nurses who are present at the time. lying skin-to-skin is a way to treat premature babies. the specific aims of this project were: 1. to increase the opportunity for skin-to-skin contact for as many infants as possible, as early as possible, including those intubated. 2. to develop a formal guideline: how to move the baby from bed/incubator skin-to-skin with parents in a safe way to help the families, nurses and physicians. methods the literature recommends disconnecting the intubated infant when moving the infant. the project set out to show that moving an infant to their parent for skin-to-skin while still connected to the ventilator is possible. a literature review was done, and based on that, plus many in-depth discussions with nicu staff, a set of procedures and guidelines were developed. the steps and procedures were documented with photographs showing how simply and beautifully one can move an infant from bed/incubator to their parent. the guideline: how to move the baby from bed/incubator skin-to-skin with parents in a safe way was completed in two years, and the nurses and doctors work together to use it and make skin-to-skin a reliable part of the infant’s treatment process. conclusion skin-to-skin care is an important component of nidcap care recommendations and a way to strengthen the family centered care. with the development of the guidelines on how to safely move intubated infants into skin-to-skin positioning, the unit now has the opportunity to offer skin-to-skin holding to all children in the unit. how to move a ventilated baby from bed/incubator to skin-to skin in a safe way hoeeg j neonanalklinikken, rigshospitatet copenhagen, denmark 2020 vol. 13 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “averages… seduce us away from minute observation.” florence nightingale greetings from the editor as we start a new decade the future looks bright for the developmental observer. we have expanded our editorial team to include debra paul as column editor for the family voices and maria maestro lopez who brings a european perspective. we took the opportunity to meet as a group together with graphic designer, rob catalano. this face-to-face meeting gave us the opportunity to discuss future directions for the developmental observer and develop a plan. in this issue we have the abstracts from the 30th annual nidcap trainers meeting held in portsmouth, new hampshire, usa. the abstract topics highlight the breadth of nidcap work from the science of oxytocin, implementation strategies for programs of reading, use of volunteers, the cicu to refugee health. the abstracts and other articles in this issue now have unique dois that will enable others to locate the articles easily through the iuscholarworks platform. we highlight the nidcap germany training center tübingen which hosts the next trainers meeting in october. you will be challenged by marjorie palmer to consider pacing for infants who have difficulty feeding, and natascia bertoncelli takes us through her involvement with the european standards and highlights this valuable resource. with our regular features from the science desk jeff alberts explores the fascinating world of epigenetics and nidcap work and debra paul introduces us to the little warrior of matilda as told by her mother tracey. we learn about developmental care in chile as we explore the globe in each issue. i welcome your feedback and suggestions for future content. i would also like to receive manuscripts on any aspect of nidcap work so we can all benefit from innovation and experiences. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia table of contents editorial ...................................................... 1 abstracts .................................................... 2 intervention strategies for the poor feeder ....................................................... 14 global perspective of developmental care – chile ............................................. 16 family voices .......................................... 17 european standards for newborn health ....................................................... 20 the science desk .................................... 22 nidcap training centers around the world ........................................................ 24 nidcap on the web ................................ 28 issn: 2689-2650 (online) do 13:2 full issue doi: 10.14434/do.v13i1.29113 abstract edition kaye spence, am editorial team (from left): sandra kosta, kaye spence, rob catalano, gretchen lawhon, debra paul, dianne ballweg, jeffrey alberts, maria maestro lopez, deborah buehler. doi: 10.14434/do.v13i1.29076 2 • 2020 • developmental observer oxytocin responsivity during skin-to-skin care and diurnal cortisol predict depression, trauma and bonding scores at nicu discharge in parents of preterm infants bollen b1,2, bernagie c1,2, verhaeghe j1,3, vanhole c1,2, naulaers g1,2 1 department of development and regeneration, women and child, university of leuven, leuven, belgium 2 neonatology department, university hospitals leuven, leuven, belgium 3 department of gynaecology and obstetrics, university hospitals leuven, leuven, belgium aims preterm birth is a potential traumatic experience for parents. several studies show a high prevalence of depressive and posttraumatic stress symptoms in mothers of preterm infants.1 hormonal changes in cortisol and oxytocin have both been implicated in these stress responses and also in parent-infant biobehavioral synchrony.2 we aimed to predict parental depression, posttraumatic stress and bonding at nicu discharge. we hypothesized that the physiological response of parents to skin-to-skin care (cortisol and oxytocin) would predict emotional distress and feelings of bonding. we also took into account early markers of parental distress (questionnaires postnatal week two). methods data were collected for the resilience study (nct02623400): a prospective longitudinal cohort study performed in the university hospitals leuven. parents (n=105 parental dyads) of 136 infants (<34w ga and/or bw< 1500 g) were included. parents completed questionnaires in postnatal week 2 and in the week before discharge. depressive symptoms (edinburg postnatal depression scale (epds)), acute trauma symptoms (acute stress disorder scale (asds)) and posttraumatic stress disorder (impact of event scale (ies) & traumatic event scale (tes)), and parental stress (pss-nicu) were measured, both in mothers and fathers. feelings of bonding were measured using the postpartum bonding questionnaire (pbq). furthermore, parental saliva samples were collected to determine diurnal cortisol profile (awakening, 30 min, 4h, 12h later) as well as oxytocin and cortisol response during kangaroo care (kc, before, 20 min, 60 min). data were analyzed using multiple regression analysis. results mothers and fathers of preterm infants in our sample show high levels of emotional distress. results show 76.5% of mothers, and 40.7% of fathers exceed clinical cut-off scores for postnatal depression. in general, these levels of emotional distress decrease during hospitalization. both in mothers and fathers, acute stress scores (postnatal week 2) but also diurnal salivary cortisol level (auc) were significant predictors of parents’ post-traumatic stress symptoms at discharge (mothers: f(2,74) = 25.49, p <0.0001, r2=0.41; fathers: f(2,64) = 19.31, p<0.0001, r2=0.38). interestingly, the salivary response in oxytocin level during kc is a significant predictor (p<0.01) of both depression and bonding scores at discharge in mothers: a higher increase in ot during kc care is associated with lower depression scores and with higher bonding scores in mothers. conclusion this study finds high levels of emotional distress in both mothers and fathers of preterm infants. acute stress scores and diurnal cortisol in postnatal week 2 predicted posttraumatic stress symptoms at discharge, both in fathers and mothers. changes in salivary oxytocin level during kc predicted bonding and depression scores in mothers. our findings emphasize the vulnerability of parents of preterm infants and draws attention to physiological responses underlying parental emotional distress. our findings also highlight the need for specialized and individualized support for nicu parents. references: 1. hynan m, mounts k, vanderbilt d. screening parents of high-risk infants for emotional distress: rationale and recommendations. journal of perinatology 2013,33(10):748. 2. feldman r. sensitive periods in human social development: new insights from research on oxytocin, synchrony, and high-risk parenting. development and psychopathology 2015,27(2):369-95. a semi-annual publication of the nidcap federation international ©2020. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria maestro lopez, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer doi: 10.14434/do.v13i1.29079 developmental observer • 2019 • 9 aims the belgian federal government promotes family centered developmental couplet care nationally.1 since 2012 the federal public services (fps) has encouraged hospitals to train their medical and nursing staff in developmental care (dc) through educational contracts. belgian hospitals with such an educational contract are offered financial support and four free dc conference days annually. moreover, the fps assigned two dc coordinators to visit these neonatal units. from 2015 till 2017 nicus training their staff in newborn individualized developmental care and assessment program (nidcap®) received financial support by the federal government. in june 2017, the fps began subsidizing dc training, specifically family infant neurodevelopmental education (fine) and compréhension de langage de l’enfant (cle) in neonatal units had not didn’t receive financial support up to that point. the objectives of this project are: • to evaluate the impact of the educational contract on the implementation and evolution of dc practices • to assess the effect of nidcap® professionals working in the neonatal unit on dc practices methods 58 out of 61 hospital sites with an educational contract completed a self-evaluation of their dc practices in the period of 2016-2017. the results of the questionnaire were analyzed in a descriptive manner. a semi-quantitative analysis was then performed for which the institutions received a score on a scale of 1 to 10 regarding a specific item in order to be able to weigh their respective importance on dc practices. the questionnaire comprised five scales: “environment”, “bed and sleep”, “care practices”, “feeding” and “couplet care”. the sum of the obtained scores from the five scales were calculated with a maximum score of 100. with these figures the nicus and level ii units are able to situate their positions set against the median value. results nicus scored significantly higher than level ii units on the implementation of dc practices, in all scales but “feeding” (environment, (z=2.1804, p=0.0292), bed and sleep practices (z=2.0135, p=0.0441), care practices (t(49.08)=-5.43, p<0.0001), couplet care (z=2.0966, p=0.0360) and total score (t(56)=-3.22, p=0.0021). units employing nidcap® professionals scored higher. significant differences were found between teams with and without nidcap® professionals (bed and sleep (z=2.8321, p=0.0046), care practices (t(56)=2.94, p=0.0047), feeding (t(56)=2.07,p=0.0426), couplet care (z=2.1149, p=.0344 and total score (t(56)=3.22, p=0.0021) but not on the “environment” scale. a small but significant correlation (r=0,389, p= 0.0019) was found for the number of nidcap® professionals working in a unit and the scores for dc practices. the more nidcap® certified personnel working in a unit, the more dc practices were implemented. between 2014-2017, in the 35 hospitals that participated every year, a distinctive positive evolution of dc practice was observed. the total score average increased with 14 points. discussion taking bias into account (self-evaluation, sample size, lack of controls), these results are merely an indication of the invested work in dc within these neonatal units. nicus apply more dc practices than level ii units and the recruitment of nidcap® professionals resulted in more dc practices. nevertheless, this project has allowed all the involved units to identify their relative positions within the dc project and use this information to grow. moreover, based on the quantitative data, the dc project has both illustrated the units’ evolution as well as highlighted areas of improvement. conclusion it is important to continue this project and to incentivize more units to join in or advance dc practices. for a more thorough evaluation of this project, another study is recommended that includes more nidcap professionals and a control site. the creation of a national label in dc will be taken into consideration. references 1. van herreweghe i, druart d, janssens k, clercx a, claesen m, tackoen m. a healthcare policy aiming to optimize parent–baby bonding in hospitals: the belgian example rev. méd. périnat. 2016; 8:3:133-40 (in french). advancement of promoting developmental care in belgium janssens k, grevesse l, clercx a, claesen m, haelterman g federal public services (fps) 16 • 2019 • developmental observer introduction very preterm infants (vpi) are exposed to atypical visual stimuli in the hospital. they are able to exhibit physiological and behavioural responses to ecological visual stimuli in the nicu from 28 weeks post-menstrual age (pma).1,2 however, little is known about their cortical responses to light level changes and the development of this cortical integration until term post-menstrual age (pma). aims we aimed to evaluate the cortical responses of vpis to light level changes of different intensities. our goal was also to follow longitudinally the development of the cortical integration of these stimuli in vpis until term corrected age and to compare them to the responses of full-term newborn infants. methods we included 25 term newborn infants and 26 vpi at strasbourg university hospital (france). the vpis were studied at three distinct ages: 32 (n=21), 36 (n=23) and 40 (n=21) weeks pma. two different light stimulations (100 and 300 lux above basal light level) were presented in a random order for duration of 5 seconds. oxyhemoglobin and deoxyhemoglobin changes were recorded by multi-channel near infrared spectroscopy (nirx®). optodes were positioned using the eeg 10-20 classification to explore the areas of interest.3 the first regions of interest were occipital (o) visual areas: oi (middle and superior occipital gyri), oii (inferior occipital gyrus and calcarine sulcus), pariétooccipital (po: middle occipital gyrus and angular gyrus). we also recorded hemodynamic changes in frontal areas (f: middle frontal gyrus) and prefrontal areas (pf: middle frontal gyrus and orbitary frontal gyri). after a specific pretreatment of the data we carefully rejected artifacts. oxyhemoglobin variations were analyzed from baseline (10 s) to 25 s post-stimulation by anova for repeated measure. results/findings a 100 lux stimulus triggered a significant increase in oxyhemoglobin (0.6 to 1.4 μmol/ l) in visual areas as early as 36 weeks pma (p <0.01). this response was also fully present in full-term infants but less present at 32 weeks pma. increases in oxyhemoglobin were also noted in frontal areas, but only in vpis at 40 weeks pma. all these results are shown in table 1. at term corrected age, the profile of responses of vpis and full-term newdevelopment of cortical integration of visual stimuli in very preterm infants zores c a,b, marchal aa, davy m a, pebayle t b, astruc d a, dufour a b, kuhn p a,c a médecine et réanimation du nouveau-né, service de pédiatrie 2, pôle médico-chirurgical pédiatrique, hôpital de hautepierre, centre hospitalier universitaire de strasbourg, strasbourg, france. b laboratoire de neurosciences cognitives et adaptatives, umr 7364 cnrs/université de strasbourg, strasbourg, france c institut des neurosciences cellulaires et intégratives, déterminants moléculaires de la douleur strasbourg, france table 1. cerebral activation in response to a 100 lux light stimulation in different groups the arrow shows the sense of variation of oxyhemoglobin; l: left; r: right developmental observer • 2019 • 17 borns were different in both occipital and frontal areas (p <0.05). a 300 lux stimulus triggered cerebral activation mainly in the frontal and prefrontal areas whatever the age of the infants. an increase in oxyhemoglobin was present at 32 weeks of pma in the frontal and prefrontal areas and in the occipital areas from 36 weeks of pma. an oxyhemoglobin decrease was also seen in some regions of interest. we present in figure 1 the responses measured in one occipital area at 40 weeks pma. conclusion cerebral hemodynamic responses to 100 and 300 lux stimuli were inconsistant but present in at least one visual area in full-term infants and as early as 36 weeks pma in vpis. at 32 weeks pma, variations of oxyhemoglobin were more inconsistant, more moderate and less diffuse. they were mainly found for higher intensities. the pattern of cortical activation for one stimulation was variable in the different age groups. we observed different profiles of oxyhemoglobin responses in term and vpis at 40 weeks pma. these results suggest a possible impact of premature birth and of the early visual environment on the developmental trajectory of the visual system with potential alteration of the neuronal network. these results support the need for better attention to light level changes during hospitalization.4 the long term effects of the early visual environment should be evaluated further. references 1. zores c, dufour a, pebayle t, langlet c, astruc d, kuhn p. very preterm infants can detect small variations in light levels in incubators. acta paediatrics 2015;104:1005–11. 2. zores c, dufour a, pebayle t, dahan i, astruc d, kuhn p. observational study found that even small variations in light can wake up very preterm infants in a neonatal intensive care unit. acta paediatrics 2018;107:1191-97. 3. kabdebon c, leroy f, simmonet h, perrot m, dubois j, dehaene-lambertz g. anatomical correlations of the international 10-20 sensor placement system in infants. neuroimage 2014;99:342–56. 4. white re. defining the optimal sensory environment in the nicu: an elusive task. acta paediatrics 2018;107:1112-1112. figure 1. cerebral responses measured in one occipital area (left oi) at 40 weeks pma after a 300 lux light stimulation variation of oxyhemoglobin (red line) and deoxyhemoglobin (blue line) 1.5 1 0.5 0 -0.5 -1 -1.5 -10 -5 0 5 10 15 20 25 12 • 2020 • developmental observer aims and methods many people believe that maternal heartbeat sounds dominate the uterine environment and that the fetus, preterm and term newborn prefer them.1,2,3 this presentation critically examines the literature addressing this belief. results in 1962, lee salk, a psychiatrist in new york city, took a walk through the zoo and noticed a monkey holding her infant close to her body in her left arm “closest to her heart”.1,2 in 40 out of 42 subsequent observations, this one monkey did the same. with these and data from observations of newly delivered women and their infants, salk concluded that every primate is imprinted to their mother's heartbeat during infancy because each female holds her own infant on the left to experience “the pleasurable sensation of her own heartbeat reflected back from the infant”. thus, behavior due to each mother’s own imprinting passes it to the next generation.2,4,5 extrapolating lavishly, salk proposed heartbeat sounds as “the basis of all later learning” and that a “universal, ...biological tendency to seek heartbeat sounds has survival value [and] …involves mutual satisfaction.”2 salk’s work was influential in bringing the importance of maternalinfant closeness to professional attention.6 with numerous, unwitting errors salk tested the theory of lifetime heartbeat imprinting in a foundling (orphan) hospital2 by comparing tape recorded nighttime sounds emitted in whole rooms of healthy infants or toddlers. one room had broadcast heartbeat sounds and the other had “no sounds” (actually room sounds) or broadcast lullabies. the conditions were not masked, and baby nurse activities were not reported. because the number of infants making sounds was not determined, even one infant could account for all room sounds. the heartbeat condition always had fewer sounds (more sleep) than the control conditions. in 1968 and 1970 several obstetricians sought to extend heartbeat imprinting into fetal life by recording sounds in utero from unconscious women in labor.7, 8 although the results were determined by methodological errors, these are the studies that catapulted intrauterine heartbeat sounds into the popular culture where they remain stuck. the emotionally attractive idea of influential intrauterine sounds accounts, in part, for the dangerous practice of propagating all kinds of sounds in the uterus via speakers attached to the pregnant belly or inserted in the vagina. a responding study using appropriate methods and equipment did not find heartbeat sounds in the uterus of conscious laboring women with a spinal block but did find room and maternal voice sounds.9 studies of heartbeat recognition in infancy generally show preferential responding to them. however, the findings may be due to too great a difference between experimental and control sounds;10,11,12,13 heartbeat sounds may be preferable only because they are simple. but a newborn’s ability to make fine discriminations14,15,16,17,18 enables contrast stimuli differing only in rhythm. there is no clear preference indicating that newborns have not had exposure to heartbeats. (such a study has not been found.) giving up a long-held belief is difficult even when alternatives are substantial.19 thankfully, the alternative to intrauterine heartbeats is gold, namely mother's voice. it, and not prominent heartbeats, has been found reliably in the pregnant uterus of humans and ewes.9,20 well-known investigators conclude, “mother’s voice… [is] the most significant and common mode of potential acoustic stimulation in the uterus.”20 conclusions credible research shows that heartbeat sounds are not distinguishable in utero but that discriminable features of mother's voice are prominent – a necessary condition to eventual language acquisition. a broad, moral-of-the-story conclusion is that there is nothing quite like a tour through primary sources to examine a common belief. references 1. salk l. the effects of the normal heartbeat sound on the behavior of the newborn infant; implications for mental health. world mental health 1960,12:168-175. 2. salk l. mother’s heartbeat as an imprinting stimulus. transactions of the new york academy of sciences 1962 april 10, 1962:753763. 3. panagiotidis j, lahav a. simulation of prenatal maternal sounds in nicu incubators: a pilot safety and feasibility study. the journal of maternal-fetal and neonatal medicine 2010, 23:106-109. 4. hess eh. imprinting. science. 1959,130:133-141. 5. moltz h. imprinting: empirical basis and theoretical significance. psychological bulletin 1960,57:291-314. 6. salk l. the role of heartbeat in the relations between mother and infant. scientific american 1973,228:24-29. 7. bench jr. sound transmission to the human foetus through the maternal abdominal wall. journal of genetic psychology 1968,113: 85-87. 8. grimwade jc, walker dw, wood c. sensory stimulation of the human fetus. australian journal of mental retardation 1970,2:63-64. 9. richards ds, frentzen b, gerhardt kj, mccann me, abrams ra. sound levels in the human uterus. obstetrics and gynecology 1992,89:186 – 190. 10. panagiotidis j, lahav a. simulation of prenatal maternal sounds in nicu incubators: a pilot safety and feasibility study. the journal of maternal-fetal and neonatal medicine 2010,23(s3):106-109. 11. ullal-gupta s, vanden bosch der nederlanden cm, tichko p, lahav a, and hannon e. linking prenatal experience to the emerging musical mind. frontiers in. systematic neuroscience 2013,7:48. 12. rand k, lahav a. impact of the nicu environment on language deprivation in preterm infants. acta pædiatrica 2014,103:245-248. 13. doheny l, hurwitz s, insoft r, ringer s, lahav a. exposure to biological maternal sounds improves cardiorespiratory regulation in extremely premature infants. the journal of fetal and neonatal medicine. 2012;25:1591-1594. 14. shahidullah s, hepper pg. frequency discrimination by the fetus. early human development. 1994;36:13 – 26. the mysterious case of maternal heartbeat sounds philbin mk independent researcher, moorestown, nj, usa doi: 10.14434/do.v13i1.29088 developmental observer • 2020 • 13 15. moon c, lagercrantz h, kuhn pk. language experienced in utero affects vowel perception after birth: a two-country study. acta pediatrica. 2013;102:156-60. 16. decasper aj, fifer wp. of human bonding: newborns prefer their mothers’ voices. science, new series. 1980;208:1174-1176. 17. decasper aj, prescott. lateralized processes constrain auditory reinforcement in human newborns. hearing research. 1984;255.135-141. 18. spence m, decasper a. prenatal experience with low-frequency maternal-voice sounds influence perception of maternal voice samples. infant behavior and development. 1987;16,133-142. 19. kuhn ts. the structure of scientific revolutions: 50th anniversary edition. 4th ed. chicago, il: university of chicago press; 2012. pp.264. 20. abrams rm, gerhardt kj. (2000) the acoustic environment and physiological responses of the fetus. journal of perinatology. 2000;20(part 2): s31 – s36. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidencebased nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 photo by sulox32 (pixabay) photo by hbieser (pixabay) t h e s c i e n c e d e s k in 1933, the lone ranger was a favorite on u.s. radios. in 1946, the show debuted on the new medium of television and became a cultural icon in the states. the lone ranger character was a mysterious, heroic cowboy. he wore a black mask and did good with humble anonymity. at the end of each episode, after a successful, selfless exploit, as our hero rode off on his white steed with his trusted indian companion, grateful townspeople would ask, “who is that masked man?” there seems to be an emerging realization that fathers of babies in the nicu are lone rangers. they are little known, but heroic. babies hold center stage in the nicu, often with a mom that becomes known, understood, and integrated into the daily routines. the dad is more likely to be off stage, in the wings, and kind of mysterious. in my experience, fathers of babies in the nicu are often “hard to read”. it is as if they are behind a mask. who is that masked man? cyr-alves, macken, and hyrkas (2018) describe our woeful state of knowledge about fathers of babies in the nicu. there is little systematic information. so they turned to a 51-bed nicu study site in the northeast of the u.s., where they probed into phenomena of stress and depression among nicu fathers. they studied 104 dads, beginning with their infants’ admission to the nicu (time (t) 1), then 3 weeks later (t2), again at discharge (t3), and finally 2 months after discharge (t4). at each of the four time points, trained staff administered two, oft-used questionaires. the specific tools used were the parental stress scale (pps), an 18-item, self-report questionnaire, and the 10-item edinburgh postnatal depression scale (epds), also a self-report questionnaire. because each father was tested at each time point, the data describe stability and change over time for each subject and, thus comprises a longitudinal study. this was practically the first of its kind. the pss expresses level of stress with a composite score that can range from 18 -90. in the hands of previous researchers, a score of 43 or more was indicative of “high” level of stress. in the present study, the average stress levels reported by the nicu fathers was a moderate, 32. statistically, there was no overall change in reported stress levels from t1 and t4, but the authors dug more deeply into the numbers and found that significantly more fathers scored as highly stressed (above 43) at t1 and at t4, suggesting that circumstances surrounding admission to the nicu and when the baby is settling into the home, can bring notable challenges. the researchers sought to measure the incidence of depression in nicu fathers and assayed for symptoms with the epds. fathers in the present study consistently produced low average scores, suggesting no depressive symptoms. again, the authors looked more deeply into the results by asking about the frequency of depressive symptoms – for this can get lost if we look only at averages. they found that 41% of the fathers reported minor signs at t1; 16% showed major symptoms at that time. amid the statistical metrics in this paper, “chronbach’s α” was used and this ominous-sounding term might need explanation. chronbach’s α represents the degree to which there is internal consistency between different tests or test items. the idea is that such consistency indicates that the tests are measuring the same construct, implying reliability and accuracy. according to conventions guiding interpretation of such scores, chronbach’s α in the present study scores indicated “satisfactory” internal consistency. in all, this thoughtfully-designed and well-reported investigation identified only modest representations of stress and few symptoms of serious depression. i think one can detect some surprise in the authors, which i found comforting, because i was shocked. the stress and depression scores do not correspond to the severity of the babies’ condition or to the realities of the impact of having a newborn requiring intensive care. why might this be? the authors considered a range of possible explanations, including a subject population lacking diversity, unknown psychological status of each father before the baby’s hospitalization. they acknowledge that self-reports are susceptible to modifications shaped by social expectations. for these or other reasons, these tests were not sensitive to reflect fathers’ experiences or were incompatible with the dads’ abilities to report their condition. i believe that this is an important and valuable research report. although the findings were mostly ‘negative’, meaning they didn’t reveal big effects, this is not failure. the research question is not whether nicu dads are stressed or get depressed, it is how do we recognize and measure the important elements that comprise the fathers’ stressed and depressed conditions? these are vital matters of well-being, also important to the health of the mother, the strength of the parental bonds, and to the development of the infant. once more sensitive measurements are identified, it will be advantageous to incorporate a control group to learn more about the tests and, importantly, to learn more about how nicu fathers differ from new fathers with healthy babies. do they show target article: cyr-alves, h., macken, l. and hyrkas, k. (2018) stress and symptom of depression in fathers of infants admitted to the nicu, journal of obstetric, gynocologic, and neonatal nursing, 47: 146-157. “who is that masked man?” jeffrey r. alberts, phd indiana university, nfi science committee, associate editor for science 18 • 2019 • developmental observer developmental observer • 2019 • 19 more or different kinds of stress or depression? how much more? carefully constructed, matched sample controls will someday be a useful part of a serious, systematic analysis of these important questions. when these fathers are better understood, it will be possible to develop and validate interventions and protections for them. more and different populations must be included. there is much to be learned about fathers in different cultures and different health care systems. we are at a most fundamental, basic starting place. we are just beginning to ask, what is behind that mask? what is hurt and what is intact? what can we provide to facilitate his fatherhood and through the derived benefits to mother, buttress a loving family that will help a sick baby recover and travel on a healthy developmental path? model of the nidcap nursery: from self-assessment to nidcap nursery certification (deborah buehler, phd, sandra kosta, ba, heidelise als, phd, september 2018) the figure graphically describes the relationship of training and support opportunities to nursery change from conventional care to consistently well-integrated nidcap care. it depicts the roles and relationships of newborn nursery components and the support opportunities offered to nursery professionals and staff engaged in this change process. the infant and family are depicted at the nursery’s core, cared for by the professionals and staff within the nursery and hospital. the hospital is understood as part of a greater community, a community from which infants and families come and to which they hope to return. the core of the figure shows the infant-parent relationship as it moves from one of infant isolation from the parents (conventional care; bottom) to one of full emotional and physical integration of infant and parents (nidcap care; top) within the nursery. the gold standard for excellence in newborn individualized developmental care model of the nidcap nursery supports for nursery change continued mentorship for self-assessment, reflection, education and training nidcap & apib training for core teams and nursery assessment review introductory/ foundational education (e.g., nfi nursery foundation education, fine, and other nfi-endorsed conferences & courses) for all professionals & staff interdisciplinary (incl. parents) goal setting and planning d. buehler, s. kosta, h. als© nidcap federation international, march 2018 nursery self-assessment: identification of strengths & challenges process of nidcap care implementation highly attuned nidcap care nursery certification consistently well-integrated nidcap care variable nidcap care nidcap beginnings conventional care family professionals & staff hospital & nursery professionals & staff nursery & hospital family infant & parents parent parent key: newborn commun ityc o m m unity philosophy & implementation of care 6 • 2020 • developmental observer aims congenital heart disease (chd) is among the most common birth defect with approximately 36,000 u.s. infants born annually.1,2 more than one-third of infants with chd will require infant surgery.3,4 neurodevelopmental disabilities are the most common, and arguably the most distressing, long-term morbidity in survivors.1,2,5 while mortality rates for children with chd have significantly declined, neurologic abnormality and neurodevelopmental impairment have increased. neurodevelopmental deficits are noted from infancy to adulthood including developmental delays, learning disabilities, social and emotional concerns and behavioral problems.6-10 there are many causes of the neurodevelopmental concerns in individuals with chd. one modifiable cause is the in-hospital care and its negative effects on the developing newborn brain. the cardiac intensive care unit (cicu), while necessary to save the life of the infant with chd, exposes infants to overwhelming stress through noxious stimuli, including painful procedures, invasive lines and tubes, toxic sensory stimulation, and separation from family. current research advocates for adjustment to medical practice to reduce the detrimental developmental effects.11,12 research also indicates that interventions such as developmental care (dc) are minimal in cardiology due to a need for staff education and a shortage of evidence for the benefits of dc in cardiology.13 individualized dc in the nidcap approach14 attempts to minimizes the mismatch between infant neurobiological needs and the cicu environment, thus diminishing the frequency and severity of adverse effects on the infant with chd. nidcap has repeatedly proven to improve neurodevelopment and psychosocial outcomes for high-risk infants and their families.15-17 the global aim of the current project was to be the first cicu to implement and measure nidcap care. methods an interdisciplinary team was convened to implement nidcap care in the cicu through quality improvement (qi). developmental care implementation included: (1) staff education, (2) child neurodevelopment assessment and intervention, (3) clinician support, (4) family support, and (5) qi measurement methodology. current care practice was evaluated using the nidcap nursery environment and care component template manual18 (templates) along with additional questions on infant holding and family participation taken from the nidcap nursery certification criterion scales.19 a five point rating scale (1=traditional care to 5=highly attuned nidcap implementation) was used. thirty cicu nurses were trained in the basics of nidcap and served as champions in the cicu. seven were additionally trained and reliable on use of the templates (>90%). background medical data was also collected. the impact of developmental care implementation was monitored through statistical process control methodology20 to observe changes in care prior to, during, and after nidcap implementation. plan-do-study act (pdsa) methodology was used to refine the process and intensify practice change. results over two years of intervention implementation, there have been no major adverse events related to nidcap care. template data was measured quarterly (77 templates, ongoing collection). evidence for significant improvement in mean scores from below the lower control limit to above the upper control limit was noted in bedding and clothing; supports for infant selfregulation; position, movement and tone; timing and sequencing of caregiving; and family participation. (figure 1) slight improvement was noted in environment and infant holding. results led to an individual task force to support environmental change, additional professionals recruited to dc team, and supplementary staff education provided. conclusion this qi study evaluates the efficacy of nidcap in the cicu for newborns with chd. evidence for significant improvement in mean scores of dc was noted in infant and family support. nidcap care efforts showed meaningful improvement in the cicu through education and staff support with ongoing need for qi science. our increased performance of developmental care is likely related to current qi efforts and dedicated developmental care team. references: 1. loffredo ca. epidemiology of cardiovascular malformations: prevalence and risk factors. american journal of medical genetics 2000,97(4):319-325. 2. fyler dc. report of the new england regional infant cardiac program. pediatrics 1980,65:377-461. 3. mahle wt, spray tl, wernovsky g, gaynor jw, clark bj. survival after reconstructive surgery for hypoplastic left heart syndrome: a 15-year experience from a single institution. circulation 2000,102(suppl 3):iii-136-iii-141. 4. jacobs jp, quintessenza ja, burke rp, et al. analysis of regional congenital cardiac surgical outcomes in florida using the society of thoracic surgeons congenital heart surgery database. cardiol young 2009,19(04):360-369. filling a significant gap in the cardiac intensive care unit (cicu): quality improvement using the newborn individualized developmental care and assessment program (nidcap) approach butler s1, hartwell l2, thornton j2, laronde m2, rachwal c2 1 psychiatry, boston children’s hospital, boston, ma usa 2 cardiology, boston children’s hospital, boston, ma usa doi: 10.14434/do.v13i1.29082 developmental observer • 2020 • 7 5. ferry pc. neurologic sequelae of cardiac surgery in children. american journal of diseases of children 1987,141(3):309-312. 6. marino bs, lipkin ph, newburger jw, et al. neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the american heart association. circulation 2012,126(9):1143-1172. 7. mussatto ka, hoffmann rg, hoffman gm, et al. risk and prevalence of developmental delay in young children with congenital heart disease. pediatrics 2014,133(3):e570-e577. 8. marino b s, p.h. l, j.w. n, al. e. neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the american heart association. circulation 2012,126:1143-1172. 9. wernovsky g. current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. cardiology in the young 2006,16(s1):92-104. 10. snookes sh, gunn jk, eldridge bj, et al. a systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. pediatrics 2010,125(4):e818-e827. 11. lisanti aj, vittner d, medoff-cooper b, fogel j, wernovsky g, butler s. individualized family-centered developmental care: an essential model to address the unique needs of infants with congenital heart disease. journal of cardiovascular nursing 2019,34(1):85-93. 12. daniels jm, harrison tm. a case study of the environmental experience of a hospitalized newborn infant with complex congenital heart disease. the journal of cardiovascular nursing 2015. 13. sood e, berends wm, butcher jl, et al. developmental care in north american pediatric cardiac intensive care uunits: survey of current practices. advances in neonatal care 2016,16(3):211-219. 14. als h. manual for the naturalistic observation of the newborn (preterm and fullterm): children's hospital, boston, mass. copyright, nidcap federation international, 2006,1981 rev. 1995. 15. als h, duffy f, mcanulty gb, et al. early experience alters brain function and structure. pediatrics 2004,113(4):846-857. 16. als h, duffy fh, mcanulty g, et al. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. j perinatol 2012,32:797-803. 17. kleberg a, westrup b, stjernqvist k. developmental outcome, child behaviour and mother– child interaction at 3 years of age following newborn individualized developmental care and intervention program (nidcap) intervention. early human development 2000,60(2):123135. 18. als h, buehler d, kerr d, feinberg e, gilkerson l. profile of the nursery environment and of care components. template manual, part i. boston: children's hospital; 1990, 1995. rev. 1997. 19. smith k, buehler d, als h. nidcap nursery certification criterion scales. boston: copyright, nidcap federation international;2009. 20. wheeler dj. understanding variation. the key to managing. 1993. the solid center line represents the average score for the entire time period (cy 2017 q3 – 2019 q2). the dashed lines represent upper and lower control limits, which correspond to ± 3σ from the center line. special cause is indicated by the red square dots above the center line, which suggest significant improvement in mean scores. figure 1. x-bar control charts showing quarterly mean scores for select nidcap template items 5 4 3 2 1 0 infant bedding and clothing m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 timing and sequencing of care delivery m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 supports of infant self-regulation m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 family participation m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 position, movement, and tone m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 4 • 2020 • developmental observer nidcap influences maternal/newborn health in the embrace refugee birth support program frankel k. private practice, developmental specialist, atlanta, ga, usa member of emory university perinatal behavioral support project friends of refugees: embrace birth family mentor aims/purpose approximately 95,000 people are living in refugee camps on the border of thailand and burma (myanmar).1,2 ethnic minorities (chin, karen and others) who have fled conflict for over 30 years have registered with the united nations to be resettled in a third country. many escaped as children and grew up with limited education, healthcare, and job opportunities. a large group has resettled in georgia finding employment in chicken processing facilities an hour north of the city. fathers leave their families 12 hours per day. pregnant women in this community are at risk for poor prenatal care due to lack of transport, caring for other children, and lapses in medicaid coverage.4,5 new arrivals struggle to learn english and to adapt to american customs. the strengths of the community are apparent in their humble nature, diet of proteins, homegrown vegetables and rice, value of the nuclear family, and nurturing of their children in close contact. this population is vulnerable when encountering the healthcare system due to language, cultural differences and lack of understanding of american healthcare practices.4,5 the embrace program is a community effort which identifies pregnant immigrant women and pairs them with caring mentors. the mentor accompanies the woman through childbirth and all prenatal, postpartum, and early pediatric appointments. the aim here is to describe how an adaptation of nidcap principles can provide a culturally sensitive framework for individualized assessment and care while mentoring a karen mother. the goal was to minimize the effects of stress of birth and hospital encounters, and improve maternal/infant birth experiences by employing principles of family centered individualized care, observation, and reflection.6 methods a 28 year-old gravida 5 para 4 burmese mother had two normal deliveries in a refugee camp prior to arrival in the us in 2013. her third pregnancy ended in fetal demise. during her 5th pregnancy she missed prenatal appointments and was labeled as high risk. english was limited and she had an extremely humble nature in the face of challenges. the embrace mentor, a nidcap trained provider, established trust and friendship by accompanying her to birth classes (instructed by another karen immigrant) where she was educated on delivery, hospital policies, infant care, and family planning. she developed a pictorial narrative of her birth plan. the mentor transported her to prenatal appointments where there was the opportunity to observe and interpret her responses to medical information, seeing the ultrasound of her baby, and painful procedures. findings labor occurred spontaneously at 39 weeks. careful observation revealed that contractions were coming 10 minutes apart. she was transported to the hospital and assessed as 4 cm dilated. the mentor remained at the mother’s side and counted contractions. labor progressed rapidly with low intensity responses from the mother. the baby was moderately distressed at birth requiring suction and stimulation. the nidcap trained mentor supported the infant on the warming table and in transition to the mother’s chest. the infant improved his status and was monitored with pulse oximetry. the mentor offered to observe the infant carefully so that mother and baby could have protected skin to skin time. in the 48 hours after the birth, nidcap principles of modifying the environment, observation, positioning, supporting with painful procedures, and maximizing skin to skin were instituted.6,7 conclusion family integrated, relationship based, culturally sensitive, and responsive maternal-infant interactions were the nidcap principles implemented improving the experience for this mother and infant. as stated in the nidcap vision statement, care was individualized, enhancing strengths and minimized the stress of hospitalization of a newborn and his family. an evidence-based approach of observation, evaluation, modification and reflection was employed.6,7 it is the hope of this author that nidcap training could be used in diverse settings and with people in need of sensitive caregiving. references 1. https://worldrelief/fortworth.org burma(myanmar) karen cultural profile/2018 2. https://ethnomed.org/culture/karen/karen-cultural-profile 3. https:www.state/gov/refugee-admissions department of state bureau of population refugees and migration 4. dyer jm, baksh l. a study of pregnancy and birth outcomes among african-born women living in utah. national center on immigrant integration policy, nov 2016. 5. grace lb, bais r, roth bj. the violence of uncertainty undermining immigrant and refugee health. new england journal of medicine 9/6/2018. 6. als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of the neurobehavioral development of the premature infant and his parents in the environment of the neonatal intensive care unit. in sweeney jk (ed.), the high-risk neonate: developmental therapy perspectives. physical and occupational therapy in pediatrics 1986, 6(3/4):3-55. 7. https://nidcap.org/wp-content/uploads/2018/missionandvision doi: 10.14434/do.v13i1.29077 developmental observer • 2019 • 13 aims/purpose in the nicu, environment sounds and noise can be challenging for the preterm and/or sick newborn baby. reducing noise to provide an environment with appropriate and meaningful auditory experiences such as parents’ voices is important. elimination of loud noises will furthermore benefit the families and staff. in 2016, the nicu at rigshospitalet copenhagen university hospital, collaborated with soundear™, a company that develops noise-meters for indicating and collecting noise levels, to develop a software program that was appropriate and easy to use. the aim was to support reduction in noise levels at the nicu through different layers of nudging: the noise meters with displays should help staff and families become aware of their own noise levels and change their noisy behavior. the software helps staff become aware of when and where noise levels are critical and something should be done differently. the software sends out noise reports on a weekly basis via email to key staff members, who use these reports as a basis for further discussion about noise at staff meetings. methods inspired by participatory research methods, soundear co-created the software program for hospital use with a group of staff from the nicu. noise-meters were installed in all rooms. half of the noise meters were anonymous white boxes, which solely measure and collect noise levels. the other half of the noise meters also have a display with an ear, that lights up green, yellow or red, indicating the current level of noise in the room. all the noise meters transfer noise measurement data wirelessly to a central computer, where it is accessible to staff through software. after having the soundear devices in the nicu for a few months, questionnaires about the perceived unit noise levels, and whether the soundear devices seemed to have changed anything, were distributed among the staff. results/findings it was determined that only a few staff members should be responsible for driving to the hospital to measure noise reduction rather than all staff members. software-generated data was used to gather insights for the staff to discuss at weekly meetings. these insights turned into auto-generated noise reports being sent to key staff members to be discussed with staff. fourteen staff members, primarily nurses, answered the questionnaire, with 78.6 % reporting that the soundear devices had made them more attentive to noise levels. the same amount reported to have changed some of their behaviour because of the soundear devices. the change that most staff members reported to have made, was when unpacking syringes and other types of medical equipment outside of patient rooms, because they noticed that the ripping of plastic made unnecessary noise around the babies. others reported lowering their voices and lowering the noise level of alarms as changes they had made after the installation of the soundear devices. several staff members also reported to have seen an increase in parents’ attention to noise levels, and that they commented on noise to other visitors and siblings, thereby spreading the attention to noise. conclusion a useful software program was developed to help strive to reduce unnecessary noise and promote appropriate surroundings in the nicu. generation of daily or weekly reports of sound levels in each room may be used to promote and evaluate targeted noisereduction activities. reducing noise through awareness in the nicu weis j, haaber j rigshospitalet copenhagen university hospital, copenhagen, denmark the 29th annual nidcap trainers meeting members of the board of directors and delegates in porto, portugal developmental observer • 2019 • 5 background understanding early preterm infants’ strengths, vulnerabilities, thresholds to stress and disorganization, and behavioural state regulation is of great importance in view of the daily care in the nicu and stabilization of preterm infants. preterm infants display observable behaviours along three main systems: the autonomic, the motor and the state systems. these behaviours according to the nidcap method are coded and recorded on a score sheet based on naturalistic observation, performed with unaided eyes. aim the primary aim of the study is to check whether cardiorespirography (crg) and video recording of the motor behaviour may enrich the information derived from the nidcap observation. method we tested a neurophysiological approach to the three nidcap observation systems using a cardiorespiratory monitor available in all intensive care units and a time-synchronized video recording of the single motor behaviour of preterm infants. crg consists of recording heart rate (hr), heart rate variability (hrv), respiration rate, and morphology of the respiration curve and oxygen saturation curve. time synchronized video recording of the single movement patterns (general movements, startles, tremors, twitches, myoclonic jerks, stretches, trunk arching, isolated arm and leg movements, and eye movements) was performed and compared with the crg data. from the four main behavioural state parameters (eye movements, body movements, hrv, type and morphology of respiration), we depicted the behavioural state profile. the nidcap observation of the infant was also simultaneously performed. subjects two hours of crg and video recording were performed in eight healthy preterm infants from the age of 27 weeks postmenstrual age (pma) during a nidcap observation. body weight at birth ranged from 635 grams to 900 grams. the mean gestational age at the time of crg recording was 31.5 weeks pma, varying from 28 to 34 weeks pma. preliminary results autonomic system: single isolated acute episodes (short apnea, bradycardia, oxygen desaturation) were present in all eight newborn infants, with various incidence and severity. all had a spontaneous resolution without external intervention. vagal tone (derived from the hrv curve) seemed to be well differentiated and age-adequate with different amplitude and cycles per minute in active sleep (as) and quiet sleep (qs) in five infants only. motor system: startle and twitches were seen only in qs whereas general movements, tremors, stretches, myoclonic jerks, trunk arching, and isolated arm and leg movements were predominantly seen in wakefulness and as. a normal quality of gms (n gms) was seen in five infants but a poor repertoire gms (pr gms) was observed in another three preterm infants. state system: the state profile showed a clear behavioural state organization and cyclicity in six infants. in two infants whose pma was less than 30 weeks, the state organization was hardly recognizable and indeterminate sleep prevailed. conclusions crg and synchronized video recording of the spontaneous and interactive behaviour of the preterm infants add extra information to the nidcap observation and drives the attention of the staff to those signs of immaturity/instability that deserve further attention and care. behavioural language of preterm infants: cardiorespirography and video recording of motor behaviour as an integration of the newborn indiviualized developmental care and assessment program (nidcap) observation ferrari f, lucaccioni l, ori l, talucci g, cuomo g, bertoncelli n modena university hospital, italy references 1. skåre c, calisch te, sæter e, rajka t, boldingh am, nakstad b, niles de, kramer-johansen j, olasveengen tm. implementation and effectiveness of a video-based debriefing programme for neonatal resuscitation. acta anaesthesiologica scandinavica. 2018; 62:394-403. https://doi. org/10.1111/aas.13050. 2. hurtubise l, martin b, gilliland a, mahan j. to play or not to play: leveraging video in medical education. journal of graduate medical education. 2013; 5(1):13–18. http://doi. org/10.4300/jgme-05-01-32. 3. als, h. manual for the naturalistic observation of newborn behavior. nidcap federation international. 2006. retrieved from http://nidcap.org. 4. als h, lester b, tronick e, brazelton b. manual for the assessment of preterm infants’ behavior (apib). nidcap federation international. 2006. retrieved from http://nidcap.org. 8 • 2021 • developmental observer column editor – debra paul, otr/l fa m i ly v o i c e s a miraculous journey by eleni gerassis i would like to share my miraculous story with you. while it was a nightmare experience, it is a story with a happy ending that has changed our lives for the better. my husband and i appreciate how blessed we are and are determined to help make a difference in the most crucial beginning of a baby’s life. life was perfect. mario and i had been married for three years with our beautiful little two-year-old sophia. we were so happy to find out we were expecting our second child. at the 20-week ultrasound, we were told everything was normal and that we were having a little sister for sophia, something i always dreamt about. we named her dimitra (dimi). at just 24 weeks pregnant my dream turned into a living nightmare. i knew something was wrong. i was so sick, not able to move, and my baby wasn’t moving. after extensive tests and consultations an initial diagnosis of congenital cystic adenomatoid malformation or otherwise known as ccam, was made. ccam is a rare abnormality in an infant’s lung development and the medical team predicted a 10% chance of survival for dimi. for us it was a chance worth taking. we were rushed to the obstetric hospital where i stayed for one month on complete bed rest to prolong dimi’s birth and give her that extra chance to survive. upon arrival to the hospital, both my unborn baby and i required special surgeries to drain large volumes of fluid from our bodies. i also had a rare in utero procedure that involved placing a shunt (drain) into the cyst growing inside dimi’s chest that would be removed during surgery after her birth. at 30 weeks, i gave birth at westmead hospital. it was mother’s day 2008 and a mother’s day i will never forget. it was not your normal natural delivery. the room was filled with doctors and nurses explaining to us the possibility our baby might not survive and that she would be taken from us at once following the birth for urgent assistance. when dimi was born, she was not breathing. once she was stabilized, dimi was placed on a ventilator and later transferred to the grace centre in preparation for surgery. we prepared for the worst and cried enough tears to fill a dam! our supportive family, who we are so grateful for, stepped in with love and around-the-clock care for our two-year-old, sophia, allowing mario to constantly stay by my side in hospital. four days after dimi’s surgery, her surgeon, the wonderful dr. soundappan, confirmed the growth in dimi’s chest was a benign teratoma tumour and that all 500g of it had been successfully removed from her tiny body. dimi’s weight was now approx. 1.5kg and mario’s wedding band fit around her ankle. unfortunately, i did not have the pleasure of holding my dimi for weeks and touched her through holes in her incubator. when i finally did get to hold dimi, she was attached to machines. i felt robbed. i didn’t want photos, gifts or anything that would remind me of her as i was so worried we would lose her. this was my way of dealing with things at the time. no beautiful flowers or congratulations. no going home with our baby. my time was filled with spending the days with her, and then having to leave her every night. leaving her was absolute torture, even though we knew she was in the best hands. dimi spent the next four months in the newborn intensive care unit attached to a special machine to help her breathe and a feeding tube to help her grow enough to go home which she did. our precious dimi came home with us on father’s day. i thank god every day for blessing me with the most supportive husband who not once left my side and my two precious daughters, sophia and dimitra who everyday remind me about the true meaning of life! dimi, i am convinced you were brought dimi following surgery doi: 10.14434/do.v14i2.32999 getting through a traumatic experience is something that takes hold of one’s life. eleni’s experience in the nicu ignited a passion within her and her family has followed in her footsteps. we are very appreciative to parents that take a leadership role in enhancing the lives of infants who are sick or who are born prematurely. support from parents that have gone through a similar experience is invaluable and helps families navigate through what is often one of the most challenging times in their lives. developmental observer • 2021 • 9 on this earth for a reason…to show us all to be fighters and to never give up. thank you, dimi, for making me the person i am today. my husband and i made a promise to ourselves and our little dimi that we would do everything possible to give back to the amazing work that saves critically ill newborn babies lives daily. we will be eternally grateful to the grace centre for newborn intensive care at the children’s hospital at westmead for the lifesaving care our daughter received. the dedicated professional team at grace centre go above and beyond their call of duty, not only caring for critically ill newborn babies, but also supporting the families during the most traumatic experience of their lives. my family and i have supported this amazing facility over the past 10 years raising over $250,000, purchasing lifesaving medical equipment, renovating various rooms within the unit, and contributing startup costs towards the australasian nidcap training centre within grace. after many years of fundraising for this cause so close to my heart, two years ago i was honored to be invited to join the board of directors of nidcap australia. through the many initiatives of the australasian nidcap training centre, i can see how the programs are helping the babies and their parents at the grace centre. dimi often tells me when we are organizing our fundraising initiatives, ‘mum, i really love getting involved, it makes me happy, and i really care about the sick babies.’ hearing this warms my heart and reinforces to me how important it is that we appreciate all that we have and what we have been given. it also reminds me that i do what i do to help make that little bit of a difference for other families going through one of the most terrifying experiences one could ever go through whilst also supporting an amazing facility that cares for the country’s sickest babies on a daily basis. neonatal intensive care units would not exist without the experienced, dedicated and highly trained staff that are required to care for our critically ill babies. dimi is now a healthy and bright 13-year-old in year 7 and absolutely loving high school. she is doing extremely well in all her subjects and tells us how one day she would love to be a “baby nurse”. we are so proud of the young woman dimi is growing up to be. she is a caring individual with a compassionate nature and determination to do well. one of most emotional and proudest moments for all of us was at the end of dimi’s last year at primary school. she became student leader, and at the year-end award’s ceremony dimi received the one and only citizenship award. this award was given to a child who has always displayed continuous service to the school community, always puts others before herself, and is an active member in the school community. i am proud to say both my girls are always the first to put their hands up when it comes to taking part in any school or community fundraising events or even just to simply lend a helping hand to their friends and family. eleni, sophia and mario enjoying the much-awaited time for a cuddle. dimi (right) with her sister sophia participating in the fundraiser race for grace bike marathon a special bond formed between dimi and kristen james nunez, nurse practitioner and nidcap professional. photo taken at the annual grace gala event 2021. developmental observer • 2020 • 17 fa m i ly v o i c e s column editor – debra paul, otr/l my little warrior tracey azzopardi going to be a mum i was always focused on my career. after six years from working overseas in hong kong, shanghai, and london, i came home to sydney to have a baby. having a baby was the one thing that i had always wanted. at 43 and after four rounds of ivf with an anonymous donor, i was ecstatic to find out i was finally pregnant. i was going to be a mum. 23 weeks~the roller coaster begins where to begin. it was still early. i hadn’t yet started ante-natal classes or visited a maternity ward. i still had plenty of time to get ready for childbirth, or so i thought. little did i know it was the start of an unexpected roller coaster journey of uncertainty and emotions. while on my way to work 23 weeks into my pregnancy, i didn’t feel right so i visited my obstetrician. several hours later with ruptured fetal membranes, my doctor explained that it was vital i deliver at a hospital with a neonatal intensive care unit. thankfully westmead hospital had a bed because later my baby would need the grace centre for newborn intensive care at the children’s hospital at westmead. i was transferred by ambulance to the westmead hospital which was only one street away and taken to the delivery suite. the following day i had an ultrasound. i could not see the monitor that the three doctors were looking at. clearly, something was wrong. my baby had moved from being ready to deliver to being transverse and the umbilical cord wrapped around my baby’s arm. my baby could not move. that afternoon one of the fellow’s from the newborn intensive care unit (nicu) came to sit with me. she was a kind and gentle doctor who took the time to listen and help me understand what was going on and the options available. the doctor explained the probability of survival and the ramifications of a delivery at such an early age. we were at 23 weeks and one day, and every day counted. what was going to happen next? i was told that one of three things would happen: contractions would start, my baby’s heartbeat would slow, or infection would set in as there was not much amniotic fluid. i was started on antibiotics and my baby’s heartbeat was checked three to four times a day. thank goodness for my mum who was with me every day. confined to bed, i hung on to hope and stayed focused on the positive. delivery at 24 weeks seven days later while lying in the hospital bed, i experienced rigors and within minutes, several members of the medical team surrounded my bed. antibiotics, steroids and vitamin k were injected, blood tests were taken, and i was put on oxygen. my obstetrician and i had a very quick discussion. as much as i wanted to experience childbirth, the only thing that mattered was giving my baby the highest probability of survival, which meant my baby being delivered by emergency caesarean. before i knew it, i was in the theatre and there were people everywhere. it’s a girl! i woke midday the following day. the nurse asked me if i knew where i was and i said yes. then i asked, “my baby…is my baby alive?” her answer was yes. i then asked, “what did i have?” she responded with “you had a girl.” it was a surreal and joyous moment that i will never forget. meeting my baby taken by wheelchair to meet my daughter, i was excited and scared at the same time. she was born at 24 weeks and 1.5 hours weighing 590 grams and required resuscitation and intubation at birth. being wheeled into the nicu and meeting my baby was overwhelming as she was in a humidicrib and there were wires and tubes everywhere with multiple pumps and machines beeping. tracey azzopardi with her daughter, matilda doi: 10.14434/do.v13i1.29091 18 • 2020 • developmental observer my baby was so tiny. it was hard to believe. the nurse explained containment holding and where i could place my hands on my daughter. needless to say, i did a lot of containment holding. picking a name upon meeting my baby girl, giving her a name was an easy choice…matilda. the meaning of her name is quite significant and means might and strength in battle. this tiny human had many battles ahead. on-going challenges in the following four weeks after matilda’s birth, she faced serious breathing and lung issues. her x-rays showed lungs that looked like they were covered in clouds and she was given two rounds of steroids to clear them. matilda’s heart valve had not switched over until a day after her second round of treatment. everything seemed to take a little bit longer. too fragile to hold, for the first three weeks of matilda’s life i placed my hands gently on her through the crib’s doors. after three weeks, i held matilda for the first time for one hour. it was our first skin to skin and it was sensational. as matilda got stronger, i was able to hold her for longer periods. skin-toskin or kangaroo care was the most precious time i had with matilda. transferring matilda out of her humidicrib was done with extreme care. it took a bit of organising and required three nurses. as soon as i would arrive in the morning, i would touch base with matilda’s nurse, find out how she was overnight, and what was scheduled for the day. together the nurse and i would figure out the best time for skin to skin. during skin to skin, matilda’s breathing would always be at its best with minimal destats. i made it my mission to do as much skin to skin as possible. our record was 6.5 consecutive hours. typically, i would usually do 3 hours each day. surgery on day 28 i arrived to find out that matilda needed a surgery consult. all i heard was the word surgery. they were going to cut my tiny baby open. preparations were underway without delay and matilda was transferred to the grace centre for newborn intensive care at the children’s hospital, westmead in sydney. a battery-operated motor was attached to the humidicrib to power the cpap and pumps, and matilda was transferred via a tunnel that connected the two hospitals. grace is a surgical nicu, and without a doubt one of the best in the country. upon admission, tests, x-rays, examinations and so on, a surgical team arrived. the medical team was standing two deep around matilda’s humidicrib. then the surgeon arrived and examined matilda and there was rigorous discussion. he introduced himself and explained that after examining matilda he could not guarantee, however was quite sure he knew what was going on and that there were no tests to confirm it. the only thing that could be done was to go in and have a look. i listened carefully. the surgeon was very clear. there was no doubt how serious it was as matilda was so distended. she was 28 days old and weighed 790 grams and had already been through so much, yet needed this surgery urgently. once the surgery was over the surgeon confirmed that matilda had nec or necrotising enterocolitis and showed me a diagram. in total, 28 centimetres or approximately a third of matilda’s bowel was removed. progress measured in baby steps post-surgery the darkest green bile kept coming out of matilda’s oral venting tube for weeks. one of matilda’s neonatologist kept reminding me, matilda runs on her own time table and we need to patient with her. i’ll always be grateful for the generosity of his understanding and ability to explain things and manage my high expectations. two weeks after matilda’s surgery, she started on one millilitre (ml) of breastmilk over four hours. every two days we slowly increased her milk by 0.5 mls per hour. it was a slow progression. when matilda’s target was reached, we then had to transition from the four-hour cycle via continuous pump to regular feeds every four hours that i would be able to do via gravity feeding at home. taking each day as it comes two steps forward and one step back was the term commonly used. taking one day at a time is the only way to go and not too fragile to hold, for the first three weeks of matilda’s life, tracey placed her hands gently on her through the crib’s doors developmental observer • 2020 • 19 get ahead of yourself. i refused to go online and read blogs etc. if i had a question, i would put it in my phone and ask the appropriate person on matilda’s medical team. attending morning and afternoon rounds meant i was always up to date and knew what was going on. it was important to learn how the nicu worked, who was who, and how to find out information or escalate concerns. a month before coming home, matilda’s nose was finally big enough to have the smallest size nasogastric tube (ng) fitted. without any tubes in her mouth, during skin to skin with the support of the speech therapist and lactation consultants, we persisted in encouraging matilda to latch on and breastfeed. they would put the stethoscope behind her ear, counting how many sucks and swallows she had. matilda was sucking, but rarely swallowing. our plan was to keep trying. i really wanted to breastfeed believing it would be the best thing for matilda’s gut and growth as she was still very tiny. my persistence was worth it as i breast fed matilda until she was 17 months when matilda was able to use a sippy cup. developmental rounds and individualised developmental care i would be so disappointed if i missed the developmental rounds. there were usually three specialists who would assess each baby and give recommendations to the nursing team. what may seem like something small to some, the recommendations for matilda had a significant impact on her. i was approached about carrying out an assessment to review and develop an individualised developmental plan for matilda. this was exciting. anything that we could do to help matilda to make her as comfortable as possible and that supported her progress was a great thing. a group of professionals going through training observed a nurse and i doing matilda’s cares. as i was shown, i would always start from matilda’s head and work my way down to her feet. the written report i received following the observation was brilliant. when changing matilda’s nappy and undoing the velcro tabs, her body would flinch and her facial expression would change. when these observations were shared in the report and i read it, i modified the way i changed matilda’s nappy. the report provided instructions for all of matilda’s team to follow. one of the trainees on the developmental team suggested i prepare a shorter version of the report as if it was written by matilda. it was then attached to the end of her bed for all of her nurses to follow. reflections from our nicu experience there was a night or two when i got all the way to the car park and had to walk back to the nicu. leaving your baby is a challenge. the best thing to do is focus on getting home, eating and sleeping, staying as healthy as possible and seeing and holding them the next day. helping my daughter’s voice be heard being matilda’s advocate and voice…that is what mums do, right? it is a balancing act. being respectful of the medical team is really important. at the end of the day or evening, you have to leave the nicu and leave your baby in the care of this team and trust is really important. going home after spending 161 days (5 ½ months) in the nicu, matilda was discharged in early december 2017 weighing 3.3kg. for ten months following discharge matilda required home cpap and was connected to a mobile corometrics monitor for obstructive sleep apnoea whenever she was sleeping. the year following discharge was full of appointments and therapy. the combination of attending a feeding clinic, physiotherapy and occupational therapy were all very beneficial. we put everything we had learnt in the nicu into practice at home. she will have glasses in the near future. matilda has chronic lung disease and will continue to be monitored. whilst matilda is delayed and in the low average range for her language, cognitive and gross motor skills, we continue to focus on these areas and i have no doubt that she will continue to improve. she is making great progress with her fine motor skills. matilda loves books and has them everywhere. we do a lot of reading. gratitude there is no doubt matilda is alive and doing so remarkably well today due to the care she received from the moment i found out she would be arriving early, and throughout her entire journey. i remain forever grateful and indebted to every person who cared for matilda and for their amazing skills, patience and empathy. they were a dedicated team of people who worked together and truly cared for matilda. matilda is now two and a half and is a very resilient, determined, happy and joyful child, who has made amazing progress and continues to thrive. she is truly loved and i am fortunate to have such an amazing daughter. we thank tracey azzopardi, matilda’s mother, for sharing her story, and matilda’s journey with us. tracey says matilda is a very resilient, determined, happy and joyful child 18 • 2020 • developmental observer the exposure to cumulative stress during critical neurodevelopmental windows early in life is a major unresolved challenge of modern newborn intensive care. in sharp contrast to the soothing environment of the womb, life-saving care provided in the newborn intensive care unit (nicu) exposes preterm infants to numerous painful and stressful interventions while separated from their mother. the experience of repetitive exposure to stress places preterm infants at risk since significant maturational processes take place in the fetal brain during the second half of gestation. these include synapse formation (synaptogenesis), programmed cell death (apoptosis), proliferation of glia cells, and the beginning of myelination. as a result of premature birth, these processes occur in a time span when the preterm infant is hospitalized in the nicu. the protection afforded by the intra-uterine environment is no longer available, leaving the infant's developing brain vulnerable to different environmental stressors. studies that explored the impact of increased exposure to stress factors in the nicu,1,2 demonstrated alterations in brain neural connectivity, increased apoptotic processes that led to decreased regional brain volume and delayed maturation of the white matter at term age. decreased regional brain volumes were found in former preterm infants even at seven years of age.3 furthermore, a growing body of evidence, from both animal and human studies, indicate that stress experienced during the fetal and neonatal period is associated with substantial long-term neurodevelopmental morbidity.4 despite the increasing evidence regarding the impact of stress on brain development of preterm infants, the mechanisms underlying these shortand long-term developmental influences remain largely unexplored. in the reviewed article, nist and her colleagues present a new conceptual framework: the neonatal stress embedding (nse) model. they put forward an explanation grounded on the biological effects that newborn stress exposure in the nicu might have on shortand long-term neurodevelopment. the authors hypothesize that stress affects brain structure and function through alterations in four biological systems: the immune system, the autonomic nervous system (ans), the hypothalamic-pituitary axis (hpa), and gene expression. these four systems interact with each other and most importantly, they can be modulated by both pre-natal and postnatal environmental variables like parental stress and maternal interaction (figure 1). the nse conceptual model might be appealing to clinicians since it is consistent with known concepts of the developmental origins of health and illness. the biological embedding of childhood adversity model 5 postulates that early life stress such as childhood maltreatment, neglect, and violence, affects subsequent adult health outcomes. it provided the theoretical framework for the nse model presented by nist and colleagues in this review. fetal and/or neonatal inflammatory processes have been long associated with adverse neurodevelopmental outcomes in the perinatal literature.6 inflammation is actually considered a common underlying mechanism in the multifactorial origins of several morbidities related to prematurity, such as bronchopulmonary dysplasia (bpd), retinopathy of prematurity (rop) and necrotizing enterocolitis (nec). studies from both adult and neonatal animal models have revealed that chronic stress responses are associated with systemic inflammation. newborn animal models further suggest that exposure to stress directly activates nervous system cells called microglia, known to play a role as primary regulators of immune responses in the brain. however, studies assessing the effect of stress on the immune function in preterm infants are still missing. the involvement of both the autonomic nervous system (ans), and the hypothalamic-pituitary axis (hpa) in stress responses is well documented. their integration into the nse model therefore seems logical, yet not thoroughly studied in this age group. in newborn infants, exposure to stress results in increased sympathetic and decreased parasympathetic activity, as measured by changes in heart rate variability (hrv). limited evidence from infants affected with sepsis suggests that decreased parasympathetic activity measured by hrv is a predictor for future neurologic impairments in preterm infants. however, the change in hrv might only be a marker for central nervous target article: nist md, harrison tm, steward dk (2019). the biological embedding of neonatal stress exposure: a conceptual model describing the mechanisms of stress-induced neurodevelopmental impairment in preterm infants. res nurs health, 42:61–71. doi: 10.1002/nur.21923 understanding the biologic effect of stress on the developing brain, and insights from the covid-19 pandemic ita litmanovitz, md neonatal department, meir medical center, kfar-saba, israel, affiliated to sackler school of medicine, tel-aviv university, tel-aviv, israel israel nidcap training center. nidcap & science sub-committee, nfi t h e s c i e n c e d e s k doi: 10.14434/do.v13i2.31060 18 • 2020 • developmental observer developmental observer • 2020 • 19 system involvement, rather than the actual cause of the neurologic insult. chronic stress exposure is also known to cause repeated activation of the hpa axis, resulting in glucocorticoid resistance. salivary cortisol levels measured before and following exposure to a stressor were lower in preterm as compared to term-born infants. changes in the hpa response were demonstrated at school age and were associated with cognitive and attention problems.7 many of the mediators linking stress exposure and neurodevelopment are, in turn, mediated by epigenetic changes in gene expression occurring postnatally, as discussed in detail by jeff alberts in a recent issue of the developmental observer.8 the article by nist and colleagues provides a comprehensive review on the topic of newborn stress and its impact on preterm infants. the article utilizes accepted models of the developmental origins of health and illness to shed new light on the impact of stress on preterm infant brain development. thereby, it underlines the need for implementing caregiving approaches aimed at reducing and modulating infants' exposure to stressful stimuli and experiences at the bedside as postulated by nidcap-based care to improve the outcomes of preterm infants. the limitation of the model is that the evidence base of the proposed concept is not strong enough, as it consists mostly of studies of human adults and of animal studies. however, gaps in evidence surely provide opportunities for new areas of research. studies that will explore and test the suggested model might help to identify infants at risk as well as interventions needed based on their risk profiles. the authors emphasize the role of nurses in practice changes (perhaps because the paper is published in a nursing journal) however, optimization of neurodevelopmental outcomes should be the priority for all clinicians caring for preterm infants. therefore, the model presented might be meaningful for all health caregivers in the nicu including decision and policy makers –when adopting practices that reduce stress in the nicu. reviewing this article in the midst of the covid-19 pandemic presented a welcome opportunity to reflect on this topic. it assisted me, as a neonatologist, to better cope with the challenges generated for hospitalized infants, families, and health care professionals. during the last months, the lived experience of a global pandemic has been extremely stressful for parents, families, and healthcare professionals; stress that might adversely affect the outcome of the preterm infants. within these extreme circumstances, in order to keep infants and health care providers safe, some nicus have adopted policies that drastically separate these medically fragile infants from their parents. it appears that some of the new guidelines implemented as a result of the pandemic lack a comprehensive perspective, and seem to disregard the basic understanding that parental physical and emotional closeness in early life is a cornerstone of optimal infant growth and development. maternal stress and depression have been shown to have adverse neurodevelopmental effects in infants9 and may enhance the deleterious effect of newborn stress. conversely, maternal closeness and early interaction may moderate infants' physiologic stress responses, affecting the degree to which stress exposure might impact neurodevelopment. maternal-infant contact as provided during kangaroo care can lessen stress responses and promote positive neurodevelopment.10,11 more parental presence and holding in the nicu have been found to be associated with better outcomes.12 especially during this stressful time, strategies to enhance sensitive parenting and positive family processes will provide a developmentally appropriate environment.13 i started my review by stating that infant exposure to cumulative stress in the nicu is a major unsolved challenge in developmental observer • 2020 • 19 figure 1. neonatal stress embedding model. ans, autonomic nervous system; hpa, hypothalamic-pituitary-adrenal. (adapted from nist et al. 2019). 20 • 2020 • developmental observer implementing nidcap with new challenges, new ways to connect hosted by the nfi 21–23 october 2020 1800 2130 gmt this will be a virtual meeting by invitation only, using an online platform. further details will be circulated via the nfi googlegroup list. newborn care. when contemplating the nse model, i deduced the reader might initially be inclined to think mostly about the experience of stress in the nicu and its potential adverse effects on preterm infants' development. this is, in my view, the desired starting point from which to approach the newborn's bedside: to have an awareness of the potential harm that our caregiving and procedures can cause. and yet, when i read the article again and let my background as a nidcap-trained and experienced neonatologist guide my reflection, i found myself thinking less about the potentially negative experience of stress, and much more engaged in envisioning the nearly boundless possibilities we have to ease and buffer that stress in the nicu. because stress experiences have a biological embedding, as the nse model proposes, the infant's expectation for maternal closeness, physical contact and relationship is certainly biologically embedded as well. we know the brain of the human infant is wired for relationships and early physical contact.14,15 by capitalizing on resources readily available in every nicu (infants, parents, love, and the unspoken yearning for closeness and relationship), we can do a meaningful job in reducing and buffering the experience of stress for preterm infants. a nidcap-based education gives us, as clinicians, two unique tools to accomplish this important "stress-reducing" job: our skills to observe infant stress and communicate it to those who care for them, and our unequivocal understanding that parents are the infants' most consistent and reliable caregivers. references 1. smith gc, gutovich j, smyser c, pineda r, newnham c, tjoeng th, inder t. (2011). neonatal intensive care unit stress is associated with brain development in preterm infants. annals of neurology, 70(4):541–549. https://doi.org/10.1002/ana.22545 2. vinall j, miller sp, bjornson, bh, fitzpatrick kp, poskitt kj, brant r, grunau re. (2014). invasive procedures in preterm children: brain and cognitive development at school age. pediatrics, 133(3):412–421. https://doi.org/10.1542/peds.2013-1863 3. ranger m, chau cm, garg a, woodward ts, beg mf, bjornson b, grunau re. (2013). neonatal pain-related stress predicts cortical thickness at age 7 years in children born very preterm. plosone, 8(10): e76702. https://doi.org/10.371/journal.pone.0076702 4. cong x, wu j, vittner d, xu w, hussain n, galvin s, henderson wa. (2017). the impact of cumulative pain/stress on neurobehavioral development of preterm infants in the nicu. early human development, 108:9 –16. https://doi.org/10.1016/j.earlhumdev.2017.03.003 5. berens ae, jensen skg, nelson ca. (2017). biological embedding of childhood adversity: from physiological mechanisms to clinical implications. bmc med, 20;15(1):135. doi: 10.1186/s12916-017-0895-4. review. 6. carlo wa, mcdonald sa, tyson je, et al. (2011). cytokines and neurodevelopmental outcomes in extremely low birth weight infants. j pediatr. 159(6): 919–925. .e3. doi: 10.1016/j.jpeds.2011.05.042. pmid:21798559 7. grunau re, cepeda il, chau cm, brummelte s. weinberg j, lavoie pm, turvey se. (2013). neonatal pain-related stress and nfkbia genotype are associated with altered cortisol levels in preterm boys at school age. plos one, 8(9), e73926. https://doi. org/10.1371/journal. pone.0073926 8. alberts j. (2020). a funny thing happened on the way to the hospital. developmental observer, 13 (1):22. doi: 10.14434/do. v13i1.29094. 9. stanley c, murray l, stein a. (2004). the effect of postnatal depression on mother infant interaction, infant response to the still-face perturbation, and the performance on an instrumental learning task. development and psychopathology, 16:1-18. 10. feldman r. (2004). mother-infant skin-to-skin contact and the development of emotion regulation. in s. p. shohov (ed.), advances in psychology research (pp. 113-131). hauppauge, ny; nova science. 11. feldman r, eidelman ai, sirota l, weller a. (2002). comparison of skin-to-skin (kangaroo) and traditional care: parenting outcomes and preterm infant development. pediatrics, 110, 16-26. 12. reynolds lc, duncan mm, smith gc, mathur a, neil j, inder t, pineda rg. (2013). parental presence and holding in the neonatal intensive care unit and associations with early neurobehavior. journal of perinatology 33:636-641. 13. pineda r, bender j, hal lb, shabosky l, annecca a, smith j. (2018). parent participation in the neonatal intensive care unit: predictors and relationships to neurobehavior and developmental outcomes. early hum dev,117:32-38. doi: 10.1016/j.earlhumdev.2017. pmid: 29275070 14. schore an (1994). affect regulation and the origins of the self: the neurobiology of emotional development: hillsdale, nj 15. siegel dj (1999). the developing mind. how relationships and the brain interact to shape who we are. 3rd ed. the guilford press. 2019 vol. 12 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “great things are done by a series of small things brought together.” vincent van gogh greetings from the editor it is a pleasure to write this editorial as the senior editor of the developmental observer. i was excited to be the successful applicant and i hope to see the developmental observer continue to serve the members of the nidcap federation international (nfi). it is certainly one of the successful resources and i look forward to working with you the members in making it an interactive newsletter for all things nidcap. i come with a history of editing a journal, a publication record and facilitating writing workshops. so you can see i do like to see the written word and using visuals as a way of communicating information. i am working with an enthusiastic editorial team and i am sure together we will continue to meet your needs for an informative and resourceful newsletter. i would encourage you to submit stories about your work and experiences with nidcap (email to: developmentalobserver@nidcap.org) as together we are a strong group making a difference for newborn infants and their families. we need to let the world know. an exciting direction for the developmental observer is to be indexed on scholarworks at indiana university, usa. this will be one of my goals in 2019 to ensure the back issues are archived and future issues are easy to find for all who are interested. watch this space for more information. this issue includes the abstracts from the 2018 nidcap trainers meeting successfully held in porto, portugal. for those lucky enough to attend it was an informative and exciting meeting with the hosts excelling themselves with their hospitality. the abstracts included in this issue come from many countries such as australia, belgium, canada, denmark, france, italy, iran, kingdom of saudi arabia, lebanon, and the usa which demonstrates the global spread of nidcap work. you can read about a variety of educational initiatives and some exciting research of the sounds in the environment, care practices such as skin-to-skin care, as well as some innovative ways to support nidcap observations through video and observing babies. a new feature has been introduced in this issue. jeffrey alberts our associate editor for science and member of the nidcap and science subcommittee has provided an enlightening summary of a target article from a recent publication. i hope the readers will be able to take home some useful ideas and help in reading some of the research around nidcap related concepts of care. enjoy reading this issue and i would like to hear your suggestions for articles and ideas to make the developmental observer your newsletter. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia table of contents editorial ...................................................... 1 abstracts .................................................... 2 a statement on state and feeding efficiency ................................................... 19 2019 inaugural world nidcap day ..... 20 nidcap care in the moment .................. 20 meetings and conferences .................... 21 nidcap on the web ................................ 23 abstract edition kaye spence, am 6 • 2019 • developmental observer a novice trainer's look: shining moments and early lessons learned dalia silberstein, phd israel nidcap training center in this article i share my personal perspective on what nidcap training means to me. not any training, but specifically that in which i became a nidcap trainer; in which my trainees and i did that very special journey for the first time. the article does not bring an all-encompassing perspective of that experience, but rather a few salient revelations that became important lessons for me. it does not propose a generalizable view of what nidcap training is or should be, nor pretends to offer clear-cut guidelines to the new trainer. and yet, it might provide others the possibility to appraise and reflect on their own training experiences. the freedom to reflect "freedom is nothing else but a chance to be better". — albert camus nidcap practice is about observing, articulating what you observed, and reflecting on it. the nidcap observation writeup, and its depiction of infant behavior in terms of the infant's strengths and sensitivities, developmental goals and suggestions for care, is no doubt one of the main "outputs" of a nidcap observation. a good write-up allows us to actually depict in our mind the intricacies and complexities that took place between the infant and the caregiver, and to grasp the infant's behavioral flow in a smooth, natural and logical wayeven when we have not actually witnessed it. a nidcap write-up, thus provides a unique and quite structured window to infant behavior. however, it is the reflective process intrinsic to an observation whether it is written or spoken that affords us a window to the observer's (i.e., the trainee's) soul. i captured the wholeness and richness of the learning process involved in nidcap training, only when the trainees' reflections were articulated and shared with me. although i cherished reflection and have always felt affinity to the reflective processes involved in nidcap work, it was while guiding my trainees through the advanced practicum that i distinctly felt there is a hidden magic to it. even when the trainees made huge progress and excelled in their observations and write-ups, it was only when they reflected about them that i felt their more vivid and multifaceted "selves" emerged. it was indeed in the reflections they shared that i more readily perceived each trainee's freedom to relate to her own experiences, insights and feelings in regard to the observation performed. that hidden magic of the reflection component of training, lays in the fact that when articulating it, trainees do not follow a specific structure or script, nor are constrained to address a particular theme, or compelled to consider each and every aspect of the caregiving interaction. quite the opposite. i prefer to think of the reflection piece of training as the one in which i prompt my trainees to actually "go wild"; the part in which they decide what they are focusing on – whether on their own feelings, the infant's experience, the family constellation, the caregiver's input, the environment, the shining moments they will cherish forever, or perhaps the mismatches they would rather not have witnessed. every thought and perception stemming from an observation is certainly legitimate and beneficial for developing a trainee's reflective competences, and to deepen our understanding of each caregiving situation. the framework for reflection involved in the nidcap training process, and even more so, the formal requirement to write those reflections down, is a crucial component of training for a wide variety of reasons, one of them being the liberating experience it affords both to the trainee and the trainer. and yet, is a sense of liberation at all important for infant care in the nidcap approach? as we constantly evolve and improve our practice as healthcare professionals, we look for innovative techniques, refine our skills, and acquire new competence. nevertheless, for many of us the ability to reflect has not traditionally been an integral part of our training nor has been cultivated and respected as an important professional attribute. even today, and in spite of the continuous evolution of our professions and work places, reflective abilities are not necessarily a valued component in a health professional's identity. reflection on our own practice requires some dose of introspection, sensitivity, tolerance, open-mindedness, and readiness to slow down. it demands our readiness to abandon our zone of comfort and requires our willingness to look at a situation anew. it turns out that as nidcap professionals and trainers, we might often be invested in conveying a not so popular message in the intensive care scenario: that reflection is a fundamental tenet of good neonatal care. in this context, the reflective experience afforded by nidcap training might well be the trainee's first "exercise" of an open and genuine reflection. by genuine, i mean taking the liberty and affording the time to wonder and to question, to think out of the box, to be humble and honest enough to be able to see both the lights and the shadows in each caregiving interaction. from left to right: gretchen lawhon, master trainer, adi freund-azaria, mot, abigail marashli, rn, bn, liat michli, bpt, andy levy, rn, mn, ita litmanovitz, md and trainer, dalia silberstein, rn, phd and trainer. developmental observer • 2019 • 7 my first experiences as a nidcap trainer taught me that to foster and protect the trainee's liberty to think and reflect, is one of the trainer's more rewarding roles. "tribal" power "individually, we are one drop. together, we are an ocean". — ryunosuke satoro my initial perception was that nidcap training is a learning and personal growth process that takes place essentially between two people: the trainee and the trainer. however, in my first experience as a trainer, the power of group work became clearly apparent. it turned out to be a critical yet quite unexpected ingredient of the training process. our first group of trainees' ability to function as a consolidated group was one of the group's decisive strengths. regardless of each trainee's professional and individual characteristics, the group managed to make progress in a wellcoordinated fashion. much energy is invested by trainees who undertake nidcap training and integrate it in their already demanding personal and professional lives. i believe this essential energy was maintained by virtue of the trainees becoming a group moving forward together. there was a "tribal" atmosphere to this initial nidcap training experience which enabled mutual motivation, reinforcement and support. while each trainee managed to keep her individuality and to personally imprint the process, they spontaneously maintained an emphasis on the group's common goals. it seems to me that fostering the power of our trainees as a group is an important part of our role as trainers as well. after all, nidcap care is about strengthening individualities (the infant's, the family's, the trainee's) while reinforcing a sense of belonging and being held. a microcosm in each advanced practicum (ap) "if everyone would look for that uniqueness then we would have a very colorful world". —michael schenker i learned that a fraction of life's complexities is represented in each and every advanced practicum experience. when reading our trainees' aps, it was as if each of them provided me with a fine telescope to look into a delicate, detailed and ever changing microcosm that, otherwise, would remain distant and out of sight. it is in fact the emerging story of an infant within his or her family that is captured in that sequence of observations that conforms to the practicum. as such, the ap provides both the trainee and the trainer with the opportunity to look closer at that microcosm and, if fortunate enough, to be able to contribute to a better beginning for that family. at some point, i intently tried to capture that ultimate single essence i believed there was in each observation and each ap i read. at a first glance, that may seem like an inappropriate simplistic approach to a complex phenomenon. yet, this kind of "synthetic" thinking, in which i tried to identify the core, the very essence of each infant-caregiver interaction, was extremely helpful for me. i thought it could perhaps be so for my trainees also. i learnt that the mental exercise of giving an imaginary title to the observed interaction, contributes to the reflection process. for i realized that even long and complex essays have titles; deep and intricate poems have titles; refined and detailed research studies are given a title. in my view, giving that imaginary title to what is observed and experienced in nidcap observations does not necessarily reduce our understanding or lacks the possibility of a broader insight, but rather helps us to focus our reflection on the topics we would like to emphasize in the training process. thus, when observing an infant or while reflecting and giving feedback on a nidcap write-up, i often asked myself, and prompted my trainees to ask themselves: "what was the infant's main message"; " is there something the infant is saying sound and clear?"; "what would be the headline for the infant's story in this specific observation?". there was therefore an essence to capture by each trainee in each of their aps. for one trainee, it was about finding the strength to engage in a new and fresh relationship after experiencing the loss of the baby she originally attempted to follow and support. for another, it was about developing the endurance and resources that were necessary to sensitively guide and support a baby girl that did medically well, yet had a very prolonged hospitalization. for a third trainee, it was about the challenges of supporting a baby whose parents spent limited time in the nicu, and about the concerns that arose during the home visit. and still for another trainee, it was about creating the necessary confidence and closeness to properly support a single mother of twin girls. the construction of dialogue "give me the gift of a listening heart". —king solomon we bring our own perceptions and mental working models to the nidcap training process. as trainers, we need to be careful and have a better understanding of our trainees' perceptions, while also making our own ones explicit without assuming they would be taken for granted. the process of giving written feedback to observation write-ups provided me with an excellent opportunity to learn that. trainees seemed to be quite unfamiliar with discussing a text (the write-up) to which many margin notes and topics for reflection were added. coming, as most of us do, from formal educational systems in which the neater and less corrected a piece of work is, the better i realized they were challenged by my notes and commentaries. they seemed to think that their work might not be good enough if they got notes and remarks. that required from me to further elaborate and explain my own perception of what is a good fundament for trainer-trainee exchanges. i consider margin notes and comments as an intrinsic part of the training process. they are to be viewed as still another way to develop an open, free and creative "dialogue" between a trainee and a trainer. this might prove especially meaningful and useful when a trainee and a trainer are able to share only limited time together at the bedside or in face-to-face conversations, as is the case in many training experiences. there are actual persons behind my reflections. they are abigail, andy, adi and liat our nidcap trainees – and ita, my nidcap companion, co-trainer, and training center codirector. i have learned from them all. 2 • 2019 • developmental observer challenges and barriers perceived by professionals in the implementation of the nidcap training in a middle income country charafeddine la, kurdahi badr lb, masri sa, abel nour gb, saad ab adepartment of pediatrics and adolescent medicine, american university of beirut, lebanon bdepartment of nursing services, american university of beirut, lebanon aims/purpose the purpose of this study is to describe the experience and challenges faced during nidcap training and implementation in a middle income country. the research questions were the following: 1) what are the barriers and challenges perceived by professionals during nidcap training and implementation? 2) what is the staff's perception regarding the nidcap’s impact on infants’ well-being, parental participation and working conditions in the unit? methods design: this is a cross sectional survey with descriptive design. setting: the study is carried out in a level iii neonatal intensive care unit in a middle income country for two months. participants: all nurses and physicians (50) who worked in the nicu for at least one year prior to and during the implementation of nidcap training were invited to participate using an online questionnaire. the questionnaire: the questionnaire was adapted from a previous swedish study; it has been used previously to survey staff opinion after nidcap implementation in several european countries. the questionnaire is based on the theory of planned behavior (topb); it includes 19 questions that measure the perception of staff, and is divided into five factors: attitude (8 items), perceived behavioral control (4 items), subjective norm (4 items), intention (2 items) and behavior (1 item). the items are formulated as statements using a five point likert scale ranging from 1 (totally disagree) to 5 (totally agree); another six related questions were added to monitor the process of nidcap implementation. questions related to participants’ characteristics and open ended questions were formulated to explore the staff experiences during the nidcap training implementation. procedure: after institutional review board approval his participants were invited to answer an anonymous online survey after being briefed about the study. statistical analysis: the statistical package for social sciences (spss), version 24 will be used for quantitative analysis. mean scores and 95% confidence intervals of the means will be calculated for the 19 items measuring the impact of nidcap on nicu conditions. results/findings the institutional review board approval has been secured. the questionnaire was adapted and piloted by five health care professional for clarity of content and applicability to our setting. they stated the tool is simple, easy to use and applicable to our setting; the language is clear and the content is understandable. no modifications to the existing questions were made. additional questions were added as described above. analysis will be done after completion of the survey. results will be compared amongst the different participants’ based on their demographic characteristics. the content of the open ended questions will also br analyzed. conclusion there is limited research exploring challenges faced by nicu nurses during the implementation of nidcap training in a middle income setting. this study will be the first to describe nurses’ perception regarding the impact of nidcap training on infant well-being, parental participation and staff development. understanding barriers in this particular setting of an arabic speaking country will help translate nidcap theory to practice in other settings similar to ours. findings would serve as grounds for us and others to promote and improve nidcap implementation in limited resource areas. a semi-annual publication of the nidcap federation international ©2019. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer developmental observer • 2020 • 9 background in new south wales, the children’s hospital at westmead (chw) is part of a regionalised health system where infants who require intensive care for surgery in the newborn period are often transported to the chw via a newborn transport service or the woman is transferred for delivery at a high risk obstetric unit associated with a children’s hospital. this often means families are separated and there are competing needs of families, siblings and work commitments many kilometres from the grace centre for newborn intensive care (gcnic). in 2017, staff in the gcnic started a family support volunteer (fsv) program designed to help support parents when they need to leave the hospital for periods of time for other obligations which may include work, family commitments and/or geographical distance from the hospital. the priority remains the attachment of the infant to their parents and supporting the family through an individualised approach to care, frequent open communication and promoting opportunities for the parents to be involved in their infants’ care. aim to describe the implementation of a unit-based family support volunteer (fsv) program to support parents and their babies who are in the nicu for surgery. methods following recommendations from a nidcap advanced practicum in 2017, a program to support families in instances where it is not possible for them to always be present with their babies was implemented. twelve fsv’s were recruited from the hospital’s existing ward volunteer program. volunteers with prior experience working in hospital clinical areas and with an expressed interest in working in the nicu were each offered six to 12 hours per week in the fsv role. they were provided with a fourhour orientation program facilitated by a nidcap trainer and a social worker. training included basic skills for: the identification of infant stress signals; support and comfort through positioning; ways to hold and talk to the baby whilst offering support; and acknowledgement of the role of the parents within the nicu. families and babies were recruited to the program by the fsv using an opt in/opt out parent consent process; bedside documentation identified families who consented for inclusion. the project was endorsed by the executive director of nursing and had ethical approval through the clinical governance unit of the organisation. following a ten month trial, a survey was distributed to the volunteers, families and staff to gauge the success of the program and to identify if changes were required. the survey was distributed electronically by the program coordinator and consisted of ten open-ended and yes/no questions. the online survey was open for completion for four weeks. results ten families were surveyed regarding the fsv program. eight (80%) of respondents had used the program. all (100%) of families that used the program identified they would recommend the program to other families. one hundred percent of the fsv’s completed the evaluation. they indicated the majority of their time was spent comforting babies, followed by recruiting families to the program. ninety-two percent of staff (n=28) indicated a family support volunteer had assisted them by providing comfort to newborn infants under their care. all (100%) of the respondents found the support offered by fsv’s useful by reducing periods of crying and distress for babies. eighty-nine percent of staff identified the presence of fsv’s allowed them to complete other tasks. conclusion the family support volunteers provided an important role in the nicu by helping parents when they were unable to be present with their baby. the collaboration between the volunteers, families and staff has resulted in the needs of the babies being met to reduce crying periods and settling the babies following interventions. supporting families in the neonatal setting: it’s time to get creative! james nunez k, griffiths n, gittany h grace centre for newborn intensive care australasian nidcap training centre the children’s hospital at westmead, sydney, australia the 30th annual nidcap trainers meeting doi: 10.14434/do.v13i1.29084 16 • 2019 • developmental observer in october 2017 we achieved our goal of becoming a nidcap training centre, this was nearly 20 years after dr. heidelise als had come to australia in 1998 to begin training in the grace centre for newborn care at the children’s hospital at westmead in sydney australia. over this time we changed trainers to dr. joy browne in 2000 and we saw many nurses, neonatologists and occupational therapists commence training. in 2008 we had our first successful nidcap professionals. in 2017 we had our first nidcap trainer – nadine griffiths. the grace centre for newborn intensive care is a quaternary service at the children’s hospital at westmead in western sydney for the state of new south wales. there are approximately 600 admissions each year of out-born neonates who require surgery in the newborn period. we work closely with the high-risk birth unit at westmead hospital across a one kilometre link bridge. we also have a close working relationship with medipole de koutio hospital centre territorial gaston-bourretin noumea, new caledonia which is a special collective of france in the southwest pacific ocean, located about 1,210 kilometres east of australia. the focus of care within grace centre for newborn intensive care is for complex newborns requiring cardiac management and surgery, general surgery and specialist medical conditions with a focus on improving outcomes, effective pain management, neurodevelopmental assessments, expert psychosocial support for families and evidenced based medical care. there are approximately 150 staff members consisting of neonatologists, neonatal fellows, registrars, nurse practitioners, clinical nurse specialists, educators, consultants, managers, occupational therapists, speech pathologists, physiotherapists, family support volunteers, social worker as well as translators, administrative and ancillary staff. there is a strong and active clinical research unit with a focus on developmental outcomes, translational research, critical appraisal and quality improvement. in 2019 there were two doctorally prepared staff, cathryn crowle and natalie fairbairn both ots and nidcap professionals. currently there are three nurses undertaking doctoral studies and the majority of nurses have a post-graduate qualification. families are very important in our nidcap training centers around the world australasian nidcap training centresydney australia nidcap professionals, kristen james nunez, jane pettigrew, nicola oste, nadine griffiths (nidcap trainer), catherine turner, joy browne (apib trainer), kim psaila, kaye spence (co-director) developmental observer • 2019 • 17 team and we have an open access policy for their participation. they are welcome during ward rounds and their contribution is encouraged. a parent advisory council was established nearly 20 years ago and has evolved in various forms. we value parent feedback and work with them on ideas for improvement. in 2018 a family support volunteer program was introduced to enable families to use the volunteers when unable to be with their baby and to entertain siblings to allow parents more one on one time with their baby when in the unit. in establishing the training centre we decided on a structure that could ensure sustainability of the centre. two co-directors, alison loughran-fowlds and kaye spence were appointed. at the same time a board of directors were appointed to oversee the work and financial costs of the centre. the current board consists of: angela casey (nurse manager), robert halliday (neonatologist representative), kristen james nunez (nidcap professional representative), cathryn crowle (allied heath representative), eleni gerassis (parent representative), nadine griffiths (nidcap trainer), gordon thomas (head, department of surgery), daphne d-cruz (neonatologist for external organisation) and donna waters (dean, sydney nursing school, sydney university). the meetings are held quarterly and chaired by the co-directors. the centre is very active and, since establishment in 2017, there have been six successful nidcap professionals complete their training. nidcap training is planned on a tier system with applicants required to have completed both fine 1 and fine 2 prior to commencement. to date 13 fine 1 courses have been delivered with 435 participants from all eight states and territories as well as indonesia. six fine 2 programs have been held with 46 participants. the fine programs are taught and mentored by nidcap professionals under the leadership of the trainer nadine griffiths. the centre has a facebook page and webpage which is very active and used to promote the work of the centre, nidcap and developmental care strategies. exciting strategies are used to ensure all babies, families and staff are aware of specific benefits based on scientific evidence. initiatives include ‘light it purple’ for world prematurity day, kangaroo-a-thon, reada-thon, mothers’ day, as well as a monthly newsletter with updated information. we are actively involved in fundraising initiatives supported by eleni gerassis, our parent representative. staff and families have participated in the race for grace (keeping stationary bikes running for 24 hours), auctions and gala balls. we are very proud of our staff and this year nadine griffiths (nidcap trainer) received the coveted consumer award at the annual hospital awards. we aim to be actively involved in the nidcap federation international and kaye spence has served on the board of directors and is the current senior editor for the developmental observer. our team has attended most nidcap trainers meetings and has contributed with many presentations over the years. last year we were delighted to have joy browne become an affiliate of the centre as an apib trainer. our goals for the future are to continue to develop and expand as resources allow. we are planning for a second trainer to enable the training program to expand to other centres. there is considerable interest in nidcap and we are currently looking at unit design as we plan to move into a new unit in a new building in 2021. this gives the opportunity to redefine our focus to ensure neuroprotective care remains not only our focus but that of the organisation’s administrators and government ministers. parents are actively involved in their baby’s care cathryn crowle, ot (nidcap professional) assessing oscar at 3 months follow-up. 10 • 2021 • developmental observer little readers read-a-thon winner 2020 theresa gisondi bsn, rn, assistant nurse manager, special care nursery the andrew tesauro’s special care nursery (scn) at abington-jefferson health in pennsylvania, usa was thrilled to participate in the little readers read-a-thon in september of 2020. our clinical nurse scientist, dr. gretchen lawhon, brought this event to our attention and we recruited nursing volunteers to plan the event. our first step in planning the read-a-thon was to involve the community by requesting book donations. we posted our advertisement for book donations throughout the hospital as well as on the newborn special care associates facebook page. during the read-a-thon, we received approximately 400 books that were used for read-a-thon “starter packs” that included five books, education on the importance of reading to infants, a handmade bookmark, and hand sanitizer to stress the importance of hand hygiene. in addition to the read-a-thon starter packs, we gave out books throughout the event and used some for prizes at the end. we continue to receive donations which allows us to have a robust library from which we continue to give books to our parents and promote reading to babies in the scn. to keep the momentum going during the read-a-thon, we created a goal of 5,000 minutes of reading and updated our the scn staff putting together the read-a-thon starter packs in 2020, staff working in special care nurseries (scn) and newborn intensive care nurseries (nicus) worldwide were invited to participate in the little readers read-a-thon. reading to babies every day supports development not only in the nicu, but also going into early infancy and childhood. babies enjoy hearing their parent’s voice over any other sound, and perhaps what’s more important is that it is an activity that parents can do every day for their baby during a time when many feel helpless in an intense and often stressful environment. reading is also linked to improved language and writing abilities at school age, so it’s never too early to start. we encourage you to join our little readers read-a-thon. the little readers read-a-thon is endorsed by the nidcap federation international. little readers read-a-thon: an initiative of the australasian nidcap training centre and life’s little treasurers foundation dates for 2021 are 6-17 september. check website for details https://lifeslittletreasures.org.au developmental observer • 2021 • 11 the scn staff celebrating the win in front of the new library. from left to right: megan marcinek, shannon macort, casey carr, theresa gisondi, lauren katcher, jeannine hoffman. family participating in read-a-thon. (used with permission) read-a-thon “minute tracker” every day. the minute tracker, which stood at the entrance of the scn, was a handmade meter that tracked the number of minutes spent reading. it provided a visual reminder to the parents of our goal and how many minutes were still needed. we ended the read-a-thon with 5,344 minutes and surpassed our goal. the passion and time the staff put into this event made it successful. they came in on their own time and put together the starter packs, designed the advertisements, and took time themselves to read to all the babies. the nurses described the read-a-thon as empowering for our parents, as they felt they were making a positive impact on their child. it was heartwarming to walk through the unit and see parents interacting and reading together to their infant. one of the families who participated in the read-a-thon told us weeks later that they continue to read to their infant every night because of the read-a-thon. winning the read-a-thon was very exciting because we knew we did the best we could for our families. we did not know what to expect going into the event, but now seeing all the good that has come from it, we will continue this annual tradition. we are honored to be able to participate with hospitals around the world and promote this simple, yet impactful intervention in the scn. the winner’s certificate 10 • 2019 • developmental observer nidcap is theory-guided, relationship-based and systemoriented. according to gilkerson & als, “changes in the larger system affect the dynamics within the smaller unit”.1 therefore it appears important to act at a national level to support nidcap dissemination. aims/purpose to describe strategies developed at a national level in france during the last decade to support developmental care and nidcap implementation. methods the goals were: 1. to create guidelines on family-centered developmental care; 2. to disseminate evidence-based data; 3. to train future neonatologists to the basis of early intervention; 4. to create a special partnership with national parents’ groups 5. to act at a political level to change national laws. working on the national system: the french experience sizun ja, bouvard cb, zana ec, zores cd, kuhn pe, casper cf, zaoui cg, thiriez gh, audéoud fh , guillois bi abrest; bsos prema, cparis port-royal; dstrasbourg, etoulouse, fvalenciennes, gbesançon, hgrenoble, icaen developmental observer • 2019 • 11 results/findings the groupe de reflexion sur l’environnement en néonatalogie (green), a special interest group from the société française de neonatalogie (sfn), including two parents groups (sos prema and ciane), is publishing texts on the parents’ role, the optimal nicu environment, postural support, skin to skin. a french book “soins de développement en néonatalogie: de la recherche à la pratique” edited in 20142 is the reference for professionals and trainees. a one-day session on developmental care has been integrated in the curriculum of pediatric and neonatal training nidcap professionnals participated in the “assises de la prématurité”, a special event created by the sfn, sos prema and politicians and in the study group “prematurity and vulnerable newborns” at the assemblée nationale. nidcap professionals are participating in the training of local and national parents’ representatives. conclusion active participation of neonatologists, implication of the national scientific society, close collaboration with parents group and contacts with politicians have created a positive climate for nidcap dissemination and implementation in france. references 1. gilkerson l, als h. role of reflective process in the implementation of developmentally supportive care in the intensive care nursery. infants and young children. 1995;7:20–28. 2. sizun j, guillois b, casper c, thiriez t, kuhn p. soins de développement en période néonatale de la recherche à la pratique 2014, publisher lavoisier msp (in french) newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 8 • 2019 • developmental observer background a component of nidcap training and the final project prior to nidcap certification, is the nidcap advanced practicum (ap). this involves following the journey of a newborn infant and their family through their nicu stay, completing systematic observations and formal write-ups of their progression. the provision of feedback to nursing, medical and allied health teams as well as the newborn’s family aims to support their growth and development in the nicu. this is a reflective paper of my experience following the death of the baby i had chosen for my advanced practicum. having worked closely with the family for almost four weeks when the baby died following complications from his congenital disease, i was left feeling quite devastated. in this paper i discuss the impact of this event on my nidcap training, and my subsequent progression to a certified nidcap professional. i describe the challenges i faced following this death and have titled this paper, a bitter sweet symphony as i reflect on this experience with sadness, gratitude and hope. introducing william i would like to introduce you to william schrader, the baby i chose for my advanced practicum. william is a beautiful little boy born at 38 weeks gestation on the 13th september 2012. he entered this world after his mother had an elective caesarean section following an antenatal diagnosis of a congenital anomaly. at birth william weighed 3400 grams or 7 pounds, 5 ounces. he was born at a high risk obstetric centre and transferred to the adjoining grace centre for newborn intensive care at the children’s hospital within 24 hours following birth for management of a left congenital diaphragmatic hernia. william is the second child to parents olivia and grant and a little brother to sister elenor. i chose to work with william and his family for my advanced practicum to demonstrate the importance of having nidcap training in a surgical newborn intensive care unit as a way of supporting these complex and fragile infants. william’s story william was incredibly fragile in his pre-surgery period and required intubation and mechanical ventilation soon after birth. he also required high level intensive care including inotropes for circulatory support, nitric oxide for respiratory failure, heavy sedation and muscle relaxation to support mechanical ventilation. he was deemed stable on day four following birth which enabled him to be transferred to the operating theatre for surgical repair of his diaphragmatic hernia. william underwent surgery on the 17th september requiring a patch closure of his left diaphragm. his post-operative course was also turbulent requiring high frequency oscillatory ventilation (hfov), nitric oxide, steroid therapy, multiple inotropic drugs, heavy sedation and muscle relaxation for prolonged periods over the course of the next 20 days. he was able to be weaned from mechanical ventilation to continuous positive airway pressure (cpap) for a brief period, however his condition deteriorated requiring escalation in medical management. he required sensitive and individualised nursing care to minimise the stress and to avoid physiological fluctuations that could compromise his stability. william’s condition deteriorated further and with maximum support being offered in the nicu, he was transferred to the adjoining paediatric intensive care unit for extracorporeal membrane oxygenation (ecmo). after six days on ecmo with no improvement in his condition, and following discussions with his parents and the health care team, a decision was made to discontinue ecmo as it was deemed a futile treatment at this stage. william died on the 7th october 2012 at 24 days young in the arms of his mother being cradled by his father. an estimated 140 pregnancies are diagnosed with congenital diaphragmatic hernia (cdh) in australia and new zealand each year, with less than half expected to survive.1 being the largest referral centre in new south wales, the grace centre for newborn intensive care sees approximately 10 babies each year, with a survival rate of 97% across the nicu. advanced practicum nidcap observations i first met william and his parents olivia and grant on the 14th september 2012 when he was transferred to our unit at two days of age. i spoke to olivia and grant about the role of developmentally supportive care for babies who have had surgery, the nidcap philosophy and the nidcap advanced practicum (ap). olivia and grant were keen for william to have this opportunity so i commenced my ap working closely with them throughout william’s stay in the nicu. i completed my first nidcap observation and report that included my observations and subsequent recommendations for william’s care on this day. my further observations and reports occurred throughout his advanced practicum experience: a bitter sweet symphony kristen james nunezn, rn, mn (advanced practice) nurse practitioner and nidcap professional, grace centre for newborn intensive care, the sydney children’s hospitals network, westmead, australia william at 4 days of age developmental observer • 2019 • 9 time in the nicu. i took the opportunity to have members of my team record some videos which enabled me to adjust my recommendations for william. babies who have had surgery and/or complex medical issues often have rapid changes in their condition requiring changes in the recommendations for support. these small videos often occurred in my absence due to my work schedule and provided a quick snapshot of william that supported adjustments to my recommendations. i placed a folder at william’s cot-side [bedside] with copies of the reports and recommendations. this enabled his parents as well as the nurses caring for william to read them each day. the goal was to enable the recommendations for william’s care to be used by all staff to provide a consistent approach when his condition was quite unstable. when william was transferred to the adjoining paediatric intensive care unit for ongoing medical care and ecmo, i met frequently with olivia and grant to remain current with william’s condition and fragility. due to william’s condition and his need for such intensive medical support, heavy sedation and prolonged periods of muscle relaxation, his nidcap goals and recommendations were limited and unable to progress throughout his short life. however the benefit of observing william and discussing these observations with his parents were an instrumental focus of the ap. challenges and rewards this experience came with many challenges but also great rewards. the challenges i faced included: • time: i had a lot of things going on at the same time as my nidcap training and completing the advanced practicum component. i was completing my master of advanced practice at the university part time, in addition i was also preparing for the birth of my first child and the commitment required for my advanced practicum became stressful. • distance from nidcap trainer: this was slightly difficult with me in australia and my trainer in the usa. although i always felt supported throughout my nidcap journey, the distance between myself and joy browne, my nidcap trainer, did not allow for immediate feedback and consultation which left me feeling a little stranded. i felt in this situation i would have benefited from having my trainer closer. in addition the time difference of 15 hours made communication difficult. • unfamiliar situation: the distance was confounded further as i was not familiar with the recommendations in this situation and it was my understanding the death of a baby during a nidcap ap was a rare occurrence which left me unclear of what direction to take. i also found it difficult to articulate the relationship i had formed with the schrader family through emails, missing that face-to-face discussion and simultaneous support. • shift work: working shifts was also a challenge. at the time of this ap i worked three 12 hour shifts each week. the acute clinical work load on a specific shift sometimes meant completing nidcap observations and the write-up work required commitment outside of my working hours. • william’s medical condition: william was extremely unwell from birth to his death which placed a great deal of difficulty on completing nidcap work and was a huge personal and emotional commitment for myself. • my own personal health: i was 27 weeks pregnant when commencing this ap journey. this challenged me from a lethargy perspective as it added another component to my already busy life. my pregnancy also challenged olivia and grant as through their own stress and grief they showed great concern about the effect my commitment to william and their family may be having on my unborn child, something i had not anticipated. although difficult, the significant challenges made the rewards much more meaningful. the rewards i gained from this experience were immense: • i am incredibly proud of the relationship i formed with the shrader family . the ap work involved speaking with them about their son aside from the medical care, diagnosis and treatment, and focusing on their baby, their william. they commented often that these conversations allowed them to see through the tubes, machines and alarms forming memories they hold onto even today. following william’s death i provided them with a small video of all the movies and photos taken throughout our nidcap journey. i said my goodbyes to william when i attended his funeral, for which olivia and grant were so grateful. • professional learning and personal growth: this experience amplified to me the importance of supporting families through the medical haze of the nicu environment. it is so vitally important to support parents to have glimpses of their babies as just that, a baby, and not the ‘24 weeker’ with chronic lung disease or the term baby with multiple congenital anomalies. i will forever take this into all my interactions with parents and this remains a focus of my care. i know i have william, olivia and grant to thank for that. outcome death and dying are an unfortunate part of the nicu journey for a small number of babies and families. this experience has shown me the relationships we make with these families is the most important part of our nidcap work. the nidcap federation international (nfi) now specifically addresses the importance of this relationship with the goal of supporting nidcap trainees during their ap. “if the infant you are observing is or should become severely ill, and perhaps die, be aware of the importance of your supportive role, which becomes even more valuable in such circumstances. the family will greatly appreciate the developmentally focused input you provide and will treasure the diary of their infant. avail yourself of the guidance of the professional in your setting skilled in the support of parents who experience the severe illness or death of their child. depending on the length of the infant’s life, you may wish to observe another infant, in order to gain sufficient experience in the context of your practicum.”2 10 • 2019 • developmental observer conclusion my journey to become a nidcap certified professional came with many challenges but also immense rewards and significant learning. i take the lessons i learned working so closely with william and his family into my clinical practice each day. my role within the nicu as a neonatal nurse practitioner allows me to continue to work closely with families, guiding them through the uncertain world of the nicu and supporting them to achieve a greater understanding of their baby’s achievements. william and his family showed me the importance of celebrating each moment. i strongly believe nidcap certification and training is essential for all health care workers, as the benefits it provides to families support these newborns long after their nicu journey ends. nidcap training has become more accessible to the southern hemisphere with the establishment of the australasian nidcap training centre, opening these benefits to many more vulnerable newborns and their families. an additional benefit is having an on-site nidcap trainer to closely supervise and support trainees throughout their nidcap journey. references 1. cundy tp, gardener gj, andersen cc, kirby cp, mcbride ca, teague wj. fetscopic endaluminal tracheal occlusion (feto) for congenital diaphragmatic hernia in australia and new zealand: are we willing, able, both or neither? journal of paediatrics and child health. 2014; 50: 226-233. 2. als h. guidelines for advanced nidcap practicum: following an infant and family from admission to discharge and transition to the home. nidcap federation international. 2015. retrieved from http://nidcap.org. disclosure the images and identities used in this presentation have been included with the consent of olivia and grant schrader. william with his parents grant and olivia save the date open 1-day conference gut feeling: the other brain. exploring the connection of microbiome, stress and infant behavior open one-day conference keynote speakers amy d’agata, rn, phd university of rhode island jeffrey alberts, phd university of indiana u the last day of the nidcap trainers meeting will be an open one-day conference. the purpose of the conference is to equip the learner with the knowledge to provide high level and evidence-based, developmentally supportive care to hospitalized infants and their families. registration details coming soon to www.nidcap.org sheraton portsmouth harborside hotel 250 market street portsmouth, nh 03801 monday october 7 2019 register at: www.nidcap.org https://nidcap.org/en/programs-and-certifications/nidcap-education/one-day-conference-portsmouth-nh-oct2019/ developmental observer • 2019 • 17 aims the overarching goal of the project was to assess the need for, implement and evaluate the change process of bringing the nidcap approach to developmental care to newborn intensive care units (nicu) in ksa by: • implementing changes in the hospital culture to fully comprehend nidcap as a systematic framework to support newborns and their families; • supporting staff to appreciate the family as vital members of the nicu community and recognizing family involvement as essential for sustaining positive effects on physical, cognitive, and psychosocial development as well as to prevent or ameliorate complications of prematurity; • supporting the caregiving staff to understand the importance of skin-to-skin kangaroo care (kmc) to infant development and infant/parent relationships. background in saudi arabia, 264 hospitals provide tertiary nicu care to 64% of the population, which in 2017 included 277,431 live births, of which 3% were considered high medical risk prematurely born infants. nidcap was introduced in 31 ksa ministry of health (moh), maternal child health (mch) nicus. these units had essentially no previous exposure to developmental care except for a three month introduction from a us group from minnesota without consistent follow-up. changes of culture in implementation of developmental care (nidcap approach) cala b nicu department improvement program, moh, saudi arabia (ksa) 18 • 2019 • developmental observer methods for this project, nidcap introduction began initially in one hospital in riyadh in 2013; the ministry of health nicus were introduced in may, 2017. the introduction included the nidcap goals to change the culture of practice to one in which caregiving staff demonstrate attitudes, values, knowledge, and skills individualized to each infant’s developmental agenda and based on behavioral observation. discussions during the presentation included: shifting care from a task-oriented to an individualized care approach; eliminating the standard one hour per day parent visiting policy and supporting active participation of the family in caregiving. these concepts were novel, and described as ‘eye opening’ to the nursery caregiver representative from the ministry of health. subsequent training activities included: neonatal mini symposia offered to different regions, updates and orientation for health workers, visits and assessment using the nidcap nursery assessment manual, implementing mandatory developmental care competencies for nicu nurses and orientation to multidisciplinary staff, introductory training with fine level 1 to 79 nicu caregivers at investigator’s own nicu (the children’s hospital, king fahad medical city, riyadh) with plans to bring professionals to nidcap training. outcome of this work has already resulted in a change in the culture of care as shown by a move to implement developmental care, and the institution of a nicu improvement program within the ministry of health. the moh nicu improvement program oversees developmental care for premature infants in the nicu which will have a major impact on the future of newborns in ksa. the program supports standardizing nicu facilities according to nidcap principles; screening for hearing, critical congenital heart defects (cchd), retinopathy of prematurity (rop), and respiratory syncytial virus (rsv); vaccination; breastfeeding advocacy; free natural family planning (nrp) consults; s.t.a.b.l.e. (sugar, temperature, airway, blood pressure, lab work, emotional support) program course enrollment for nicu nurses and physicians; and monthly reports of key performance indicators (kpi) based on the vermont oxford network benchmarks. in support of this effort, the investigators have embarked on nidcap nursery certification from the nidcap federation international (nfi) and joined the nfi and the european foundation for the care of newborn infants (efcni) in the celebration of 2017 world prematurity day and international kangaroo care day. results/progress to date • policy development permitting and encouraging parents to have unrestricted access to their infant and to hold skin-toskin (kmc) is the most challenging part. this is related to culture sensitivity around clothing and modesty and in communicating the documented importance of kmc. • developmental care began in may 2017 with follow-up visits scheduled for twice a year. • one hospital successfully initiated kmc to their nursery during the first year of implementation. • three day courtesy visits were scheduled to hospital leaders of nurseries using the nidcap nursery assessment manual scoring tool. • orientation and lecture were made available to multidisciplinary staff of the hospital including nicu nurses and physicians. • recommendations based on the nursery assessment manual scoring, that indicated strengths and challenges, were discussed with multidisciplinary nicu staff with reassessment planned after 6 months. • orientation, awareness and lectures given introducing nidcap developmental care reached: o nicu nurses 1,337/2000, 66.85%; o nicu physicians 334/700, 47.71%; o multidisciplinary teams 905/6,500, 13.92%; o lecture, awareness, symposium and orientation 31/77, 40.25%; o hospital visits 31/35, 88.57%; o professionals from the 4 hospitals not visited due to critical area and culture, were however, identified and guided to introduce developmental care to their staff. conclusion the nidcap approach to developmental care necessitates a change of nicu culture which helps healthcare professionals and healthcare institutionsmost fully benefit from the impact of developmental care. developmental care improves the nicu culture and gives parents and families the opportunity to play a major role in the care of their newborns and itchanges the culture to fully comprehend how nidcap developmental care supports newborns and their families. call for expression of interest to join the editorial team we are calling for expressions of interest from nfi members to join the editorial team. we would like global representation. email senior editor kaye spence at: developmentalobserver@nidcap.org developmentalobserver@nidcap.org 10 • 2020 • developmental observer background/significance there is growing evidence that the premature infant and the developing brain, is influenced especially in the vulnerable window of time the infant is cared for in the newborn intensive care unit (nicu). it has been optimistically, yet incorrectly, proposed that healthy preterm infants without major complications eventually catch-up developmentally to term infants. research suggests as preterm infants mature, many remain increasingly disadvantaged on many neurodevelopmental outcomes. parental touch, especially during skin-to-skin contact (ssc) has the potential to reduce the adverse consequences of prematurity. ssc is an evidenced-based holding strategy that increases parental proximity and provides a continuous interactive environment known to enhance infant physiologic stability and affective closeness between parents and their infants. purpose the purpose of this research study was to examine bio-behavioral mechanisms; and specifically, to evaluate whether infants with higher oxytocin levels have more competent neurobehavioral functioning. methods this randomized cross-over design study used a three-day timeframe conducted in the nicu. the sample consists of 28 stable preterm infants (30 0/7 – 34 6/7 weeks gestational age between 3 -10 days old) and their mothers/fathers. after informed consent, each triad was randomly assigned to one of two sequences: maternal ssc on day one and paternal ssc on day two; or paternal ssc on day one and maternal ssc on day two. infants' and parents’ saliva samples for oxytocin and cortisol were collected pre-ssc, 60-min during-ssc, and 45-min post-ssc. infant neurobehavioral assessment using the nicu neurobehavioral network scale (nnns) was collected prior to hospital discharge. analysis/results data were analyzed using ibm spss version 25; descriptive statistics were used to describe demographic characteristic variables. paired t-tests were used to examine infant salivary oxytocin levels and infant neurobehavioral functioning. oxytocin release was activated for mothers (p<0.001), fathers (p<0.002) and infants (p<0.002) during skin-to-skin contact. there was also a relationship identified using pearson’s correlation between infant oxytocin levels and the infant’s neurobehavioral functioning. infant salivary cortisol levels were correlated to summary scales of infant stress behaviors and higher levels of disorganization. infants held ssc with their mother with higher salivary oxytocin levels had significant correlations to high self-regulatory summary scores (r=.544, p<0.003), and a strong negative correlation to excitability summary scores (r=.761, p<0.001). these infants with lower salivary cortisol levels had a strong negative correlation to handling summary scores (r=.594, p<0.025) and stress summary scores (r= -.534, p<.049). infants salivary oxytocin levels, when held ssc by their fathers, had strong correlations with higher self regulatory summary scores (r=.396, p<0.041), and a moderate negative correlation with infant lethargy summary scores (r=-.400, p<0.039). there was also a moderate correlation for infants held ssc by their fathers with higher cortisol levels to have higher lethargy summary scores (r=.459, p<0.016). conclusions despite advances in the nicu, premature infants remain at risk for adverse neurodevelopmental outcomes. this is an important step in exploring oxytocin as a potential moderator to improve infant neurodevelopmental outcomes and the effects of ssc on mothers, fathers and infants. nurses can use ssc as a strategy to activate oxytocin and enhance infant developmental outcomes. this study also supports, in conjunction with the views of the american academy of pediatrics, the value that all preterm infants and their parents should have the opportunity for ssc every day. keywords skin-to-skin contact; preterm infant; oxytocin; neurodevelopment; nicu network neurobehavioral scale statement of financial support: the authors have no financial relationships with commercial entities to disclose. acknowledgements this study was supported with funding from the national association of neonatal nurses, american nurses foundation (eastern nursing research society), sigma theta tau international (mu chapter) and the university of connecticut, school of nursing (toner funds). oxytocin release is strongly associated with premature infant behavioral patterns vittner d1,2, lawhon g3, d’agata a3,4, mcgrath jm6, young e1,4-5 1 university of connecticut, school of nursing, storrs, ct 2 wakemed health & hospitals, raleigh, nc 3 abington hospital-jefferson health system abington, pa 4 university of rhode island, kingston, ri 5 genetics and genome sciences, uconn school of medicine, farmington, ct 6 institute for systems genomics, university of connecticut, storrs, ct, doi: 10.14434/do.v13i1.29087 developmental observer • 2020 • 11 references 1. baley, j. (2015). skin-to-skin care for term and preterm infants in the neonatal icu. pediatrics, 136(3), 596-599. 2. conde-agudelo, a., belizan, j. m., & rosello-diaz, j. (2014). kangaroo mother care to reduce morbidity and mortality in low birth weight infants. cochrane database of systematic review, 4(4), cd002771. 3. cong, x., ludington-hoe, s. m., hussain, n., cusson, r. m., walsh, s., vazquez, v., ... vittner, d. (2015). parental oxytocin responses during skin to skin contact with preterm infants. early human development, 91, 401-406. 4. feldman, r. (2015). sensitive periods in human social development: new insights from research on oxytocin, synchrony and high-risk parenting. development and psychopathology, 27, 369-395. http://dx.doi.org/10.1017/s0954579415000048 5. feldman, r., & eidelman, a. (2003). mother-infant skin to skin contact (kangaroo care) accelerates autonomic and neurobehavioral maturation in preterm infants. developmental medicine and child neurology, 45, 274-281. 6. ferber, s. g., & makhoul, i. r. (2004). the effects of skin to skin contact (kangaroo care) shortly after birth on the neurobehavioral responses of the term newborn: a randomized controlled trial. pediatrics, 113(4), 858-865. 7. hack, m., taylor, h., schluchter, m., andreias, l., drotar, d., & klein, n. (2009). behavioral outcomes of extremely low birthweight children at age 8 years. journal of developmental behavioral pediatrics, 30(2), 122-130. 8. howson, c. p., kinney, m. v., & lawn, j. e. (2012). born to soon: the global action report on preterm birth. march of dimes, pmnch, save the children, who. 9. lee, h. j., macbeth, a. h., pagani, j. h., & young, w. s. (2009). oxytocin: the great facilitator of life. progressive neurobiology, 88(2), 127-151. 10. ludington-hoe, s. (2011). evidence-based review of physiologic effects of kangaroo care. current women’s health reviews, 243-253. 11. ludington-hoe, s., anderson, g., swinth, s., thompson, c., & hadeed, a. (2004). randomized controlled trial of kangaroo care: cardiorespiratory and thermal effects on healthy preterm infants. neonatal network, 23, 39-48. 12. marlow, n., hennessy, e., bracewell, m., wolke, d., & group, e. s. (2007). motor and executive function at 6 years of age after extremely preterm birth. pediatrics, 120, 793-804. 13. moore, e. r., anderson, g. c., & bergman, n. (2007). early skin to skin contact for mothers and their healthy newborns. the cochrane database of systematic reviews, 3. 14. mori, r., khanna, r., pledge, d., & nakayama, t. (2010). meta analysis of physiologic effects of skin to skin contact for newborns and mothers. pediatrics international, 52, 161-170. http:// dx.doi.org/10.1111/j.1442-200x.2009.02909.x 15. ross, h. e., & young, l. j. (2009). oxytocin and the neural mechanisms regulating social cognition and afflictive behavior. frontal neuroendocrinology, 30(4), 534-547. 16. vittner, d., casavant, s., & mcgrath, j. (2015). a meta-ethnography: skin to skin holding from the caregiver’s perspective. advances in neonatal care, 15(3), 191-200. 17. vittner, d., mcgrath, j. m., robinson, j., lawhon, g., cusson, r., eisenfeld, l., walsh, s., young, e., & cong, x. (2018). increases in oxytocin from skin-to-skin contact enhances development of parent-infant relationships. biological research for nursing, 20(1), 54-62. http://doi: 10.1177/1099800417735633 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 14 • 2019 • developmental observer introduction very preterm infants (vpi) are exposed to atypical visual stimuli in the hospital. their visual system was shown to be mature enough to allow them to physiologically react to ecological visual stimuli in the nicu from 28 weeks post-menstrual age (pma).1 these stimuli have also been shown to induce sleep disruption.2 however, little is known about their behavioural responses to light level changes of different amplitudes, encountered in the hospital environment. aims we aimed to evaluate the behavioural responses of vpis to light level changes of different intensities. our goal was also to follow longitudinally the development of these responses in vpis until term corrected age and to compare them to the responses of fullterm newborn infants. methods we included 25 term newborn infants and 26 vpis at strasbourg university hospital (france) from september 2016 to june 2017. the vpis were studied at three distinct pma: 32, 36 and 40 weeks pma. infants were recorded during sleep when they were lying on their back, in a nest. three different light stimulations (34, 100 and 300 lux above basal light level) were presented in a random order for a duration of 5 seconds. video recordings were centred on the infant's face to appreciate their behavioural responses assessed by the nfcs (neonatal facial coding system) score, reduced to four items, in 10 seconds epochs.3 the maximum nfcs score over the period of 60 seconds post stimulation was retained and was compared to the nfcs score determined during the 10 seconds preceding the stimulation (t test). results/findings we observed a significant increase in the mean nfcs scores from the pre-stimulation period to the post-stimulation period, represented by the mean of maximal scores of post stimulation periods. this was noted regardless of the intensity of stimulation and whatever the pma (all, p<0.05). in preterm infants at 40 weeks pma, means nfcs score were significantly higher at 100 lux (t (36) = 2.9, p = 0.006) and at 300 lux (t (36) = 2.8, p = 0.009) compared with those following 34 lux stimulations: respectively 1.6 (+/1.0) and 1.6 (+/1.1) vs 0.72 (+/0.83) for 34 lux. we found this same difference at 32 weeks of pma. the average nfcs score to 34 lux stimuli was 1.2 +/0.9 versus 1.8 mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, april 29, 2017 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 even moderate visual stimuli leads to behavioural responses in term and preterm infants zores ca,b, vincent va, marchal aa, davy ma, astruc da, dufour ab, kuhn pa,c amédecine et réanimation du nouveau-né, service de pédiatrie 2, pôle médico-chirurgical pédiatrique, hôpital de hautepierre, centre hospitalier universitaire de strasbourg, strasbourg, france. blaboratoire de neurosciences cognitives et adaptatives, umr 7364 cnrs/université de strasbourg, strasbourg, france cinstitut des neurosciences cellulaires et intégratives, déterminants moléculaires de la douleur strasbourg, france developmental observer • 2019 • 15 +/0.9 at 100 lux (t (36) = 2.3, p = 0.02) or 1.9 +/0.9 to 300 lux (t (37) = 2.3, p = 0.02). the mean nfcs score was significantly higher at 32 compared to 36 weeks pma for a 100 lux light stimulation: 1.9 (+/0.8) vs 1 (+/1.1) (t (40) = 2.8, p = 0.04)). similar results were observed for a 300 lux light stimulation: 1.9 (+/0.9) versus 1.2 (+/1.2) (t (42) =2.0; p = 0.05). the main results are summarized in figure 1. conclusion even low-intensity visual stimulation leads to behavioural responses, measurable through scales evaluating pain and discomfort. this was present in all subgroups of infants, regardless of the level of immaturity of the newborn infants. the level of light stimulation and gestational age appeared to be the main determinants of the intensity of discomfort. all these results have clinical implications and support the need for better attention to light level changes during the hospital stay.4 references 1. zores c, dufour a, pebayle t, langlet c, astruc d, kuhn p. very preterm infants can detect small variations in light levels in incubators. acta paediatrics 2015;104:1005–11. 2. zore, c, dufour a, pebayle t, dahan i, astruc d, kuhn p. observational study found that even small variations in light can wake up very preterm infants in a neonatal intensive care unit. acta paediatrics 2018;107:1191-97. 3. grunau re, oberlander t, holsti l, whitfield mf. bedside application of the neonatal facial coding system in pain assessment of premature neonates. pain 1998;76: 277–86. 4. white rd. defining the optimal sensory environment in the nicu: an elusive task. acta paediatrics 2018;107: 1112-1112. figure 1. variation in nfcs score by population and intensity 3 2.5 2 1.5 1 0.5 0 3 2.5 2 1.5 1 0.5 0 3 2.5 2 1.5 1 0.5 0 3 2.5 2 1.5 1 0.5 0 preterm infants at 32 weeks pma preterm infants at 36 weeks pma preterm infants at 40 weeks pma term newborn infants 34 lux 100 lux 300 lux 34 lux 100 lux 300 lux 34 lux 100 lux 300 lux 34 lux 100 lux 300 lux mean nfcs scores during pre-stimulation periods are represented in blue and during post-stimulation periods in red. the vertical bars represent the standard deviation. *p <0.05, student's t test 12 • 2019 • developmental observer background/significance over 15 million premature infants are born annually around the world. it has been optimistically yet incorrectly proposed, that healthy preterm infants without major complications eventually catch-up developmentally to term infants. research shows these preterm infants remain increasingly disadvantaged on many neurodevelopmental outcomes. parental touch, especially during skin-to-skin contact (ssc) has the potential to reduce the adverse consequences of prematurity. ssc is an evidenced based strategy that increases parental proximity and provides an interactive environment known to enhance infant physiologic stability and affective closeness between parent and infant. evidence suggests ssc activates oxytocin release in mothers, fathers and infants. relevance to nidcap this study provides evidence to support developing relationships between mothers, fathers and premature infants. early responsive and synchronous contacts with parents may positively influence cognitive and developmental outcomes for premature infants. parental engagement creates an opportunity guide future research on how to increase parents’ active participation with their premature infants. aims/purpose the purpose of this research study was to examine bio-behavioral mechanisms of ssc for parents and preterm infants. specifically, is there a relationship between salivary oxytocin and cortisol levels and parental engagement as measured with the parent risk evaluation on engagement model and instrument (preemi)? methods: this randomized cross-over design study used a 3-day timeframe conducted in the newborn intensive care unit (nicu). twenty-eight stable preterm infants (30 0/7 – 34 6/7 weeks gestational age between 3 -10 days old) and their mothers and fathers participated. after informed consent, each triad was randomly assigned to one of two sequences: maternal-ssc on day 1 and paternal-ssc on day 2; or paternal-ssc on day 1 and maternal-ssc on day 2. infants' and parents’ saliva samples for oxytocin and cortisol were collected 15-min pre-ssc, at 60-min during-ssc, and 45-min post-ssc. parental engagement was measured using the preemi just prior to hospital discharge. results data analysis was performed using ibm spss version 18. data were not normally distributed; therefore pearson’s correlation was used to measure the relationship between salivary oxytocin and cortisol levels with maternal and paternal engagement composite scores. multivariable linear regression models were used to model the effect of maternal and paternal oxytocin and cortisol levels independently on engagement composite scores, adjusting for infant oxytocin and cortisol levels respectively. there was a significant negative correlation between paternal oxytocin levels and paternal engagement (r= -0.43; p-value = 0.03) and a significant negative correlation between infant oxytocin levels and maternal engagement (r= -0.54; p-value = 0.004). there was no significant interaction between maternal oxytocin or maternal cortisol levels and maternal engagement scores. however, the adjusted linear regression model showed that as infant oxytocin levels increased maternal engagement scores significantly decreased (β: -0.04; p-value= 0.01). the unadjusted linear regression model showed that as paternal oxytocin levels increase paternal engagement scores significantly decrease (β: -0.14; p-value = 0.03). linear regression, adjusted for infant oxytocin and cortisol levels, showed that as paternal oxytocin levels increase there was a significant decrease in paternal engagement (β: -0.16; p-value = 0.03) and as paternal cortisol levels increased there was a significant decrease in paternal engagement (β: -68.97; p-value = 0.05). conclusions salivary oxytocin and cortisol levels significantly influence parental engagement. oxytocin facilitates social sensitivity and attunement necessary for developing relationships and nurturance for emotional and physical health. defining parent engagement facilitates identification of parent-risks and needs for intervention to optimize outcomes for premature infants. statement of financial support the authors have no conflict of interests to report. this research was supported by funding from: national association of neonatal nursing, american nursing foundation (eastern nursing research society), sigma theta tau (mu chapter), and the university of connecticut school of nursing (toner fund). reference vittner d, butler s, smith k, brownell e, samra h, mcgrath j. parent engagement correlates with parent and preterm infant oxytocin release during skin-to-skin contact. advances in neonatal care 2019;19(1):73-79. doi.10.1097/anc.0000000000000558 skin-to-skin contact activates oxytocin release and correlates to parent engagement vittner da,b, butler sc,d, smith kb, makris na, samra he, mcgrath ja auniversity of connecticut, school of nursing, storrs, ct, usa bconnecticut children’s medical center, hartford, ct, usa cboston children’s hospital, boston, ma, usa dharvard university, medical school, boston, ma, usa esouth dakota state university, brookings, sd, usa 20 • 2020 • developmental observer survival rate for preterm infants is continuously improving thanks to advances in medical science. despite this, preterm birth is still a challenge worldwide. the treatment for preterm and ill newborn infants is very complex and it requires specially trained healthcare professionals. in europe, there is variation in the provision of care for preterm and ill newborn infants at a national, regional, and hospital level including the education available for healthcare professionals. moreover, national guidelines, when they do exist, vary from country to country. the european standards of care for newborn health (escnh) is an interdisciplinary collaboration project that addressed the disparities in provision and quality of care through the development, and now publication of standards of care for key topics associated with preterm birth and neonatal morbidity. eleven areas were selected to address, the so-called topic expert groups or teg (see figure 1), in which the standards were developed and looked beyond (medical) care of infants and included nicu design, follow-up and continuing care, infantand family-centred developmental care, and ethical-decision making. escnh is a true patient-centred project, and for the first time, patients were involved in every step in the development of standards. in collaboration with parent representatives from more than 30 countries, there were about 220 healthcare professionals from different practice areas involved and worked over several years to create the standards. the standards were launched at the european parliament in brussels in november 2018. by that time, 108 healthcare societies and associations as well as 50 parent organisations accepted the european foundation for the care of newborn infants (efcni) invitation and officially supported the newly developed standards. the escnh help support the rights of the child of the un convention assembly by serving as a reference for the development and implementation of standards and guidelines on a national and international level. i personally took part on the standard in infant and familycentred developmental care (ifcdc). the role of the topic expert group on ifcdc was defining practice standards for the implementation of newborn care centred around the infant and his/her family in order to support optimal health and development of preterm and ill newborn infants. this standard is divided in another 10 sub-topics and i was involved mainly in the “education and training for infantand family-centred developmental care” section. my group was comprised of a multidisciplinary team from different countries in europe and we worked together, exchanging hundreds of emails over several years. our aim was developing educational pathways that ensure that all nicu professionals have educational and training opportunities to develop the knowledge and skills needed to implement high quality infant and family-centred developmental care, which includes guiding of parents as primary caregivers. it was a huge task and incredibly satisfiying. i had the chance to work with amazing people that included sharing ideas and reflections. each email shared was an opportunity to recalibrate my attention on preterm infants and their parents who i care for in my nicu, and i learned a lot. all the nidcap professionals in my team in modena, and myself, are working to spread the european standards of care for newborn health in all the nicus in italy. this project and the work that came out of the developed european standards of care for newborn health is a powerful tool to provide all preterm infants and their parents with the best possible care. european standards of care for newborn health natascia bertoncelli developmental therapist, nidcap trainer, neonatal intensive care unit, university hospital of modena, modena, italy figure 1. the 11 topic expert groups doi: 10.14434/do.v13i1.29090 6 • 2019 • developmental observer aims/purpose the value of supporting neurodevelopmental outcomes by reducing stress and noxious stimuli in the nicu has been established in the literature over the past 20 years.1,2 developmental care and its application in the clinical setting is reported as inconsistent, yet there is no literature exploring neonatal nurses’ perceptions of developmental care and its application within the australian context. we undertook this survey to gauge the current practices across australia as part of a planning exercise for future neurodevelopmental care (ndc) training and implementation of nidcap. methods the survey was modified from a tool exploring neonatal nurses perceptions of family centered care and developmental practices in the united states of america.3 the modified survey consisted of thirty six questions exploring nurse’s personal perceptions and beliefs relating to family centered care, developmental care and skin to skin practices. additional questions relating to ndc education attendance were included by local researchers. the survey was distributed via the online qualtrics© platform to seven hundred and eighty three (n=783) specialty neonatal nurses in australia. results one-hundred and seventy three (n=173) nurses completed the survey with a 22 percent response rate. statistical analysis of the data utilised fishers exact test for association and unadjusted odds ratios. statistically significant associations were demonstrated for: place of employment (nursery versus combined neonatal intensive care/nursery unit) with combined units associated with increased support for open visiting hours (p=0.023) and skin to skin holding (p=0.009). supportive positioning (p=0.026) and recognition of the influence of the nicu layout/design (p=0.055) was also positively associated with combined units. respondent post graduate education levels were associated with increased recognition of the influence of the nicu environment (p=0.025). whilst lower levels of agreement (not statistically significant) were seen in all groups relating to parental involvement in care, and support of peers or the multidisciplinary team to facilitate skin to skin holding. differences were noted between rural (n=21) and metropolitan (n=150) respondents access to ndc education. seventy one (71) percent of ndc training for rural respondents occurred outside their hospital. with rural center respondents two times more likely to have completed education greater than six months ago (p=0.005). of concern the majority of respondents (64%) who had attended education in the past two years had received less than one hour of ndc education. with eight percent indicating they had never attended ndc education. conclusion respondents in this study demonstrated high levels of support for the concept of ndc. in the context of this survey, location, place of employment and level of education were identified as influencing the application of ndc components. given the nidcap community’s role in providing educational and consultative support in the nicu and special care nursery settings to ensure effective delivery of neurodevelopmentally supportive, individualized, and family-centered care understanding the potential influence of location and country specific factors is essential. exploring the unique geographical differences seen within the global healthcare setting can ensure context specific needs are met when implementing ndc education programs including nidcap. references: 1. d’agata al, sanders mr, grasso dj, young ee, cong x, mcgrath jm. unpacking the burden of care for infants in the nicu. infant mental health journal, 2017; 38:306–17. 2. spence k. historical trends in neonatal nursing: developmental care and nidcap. the journal of perinatal and neonatal nursing 2016;30:3:273-76. 3. hendricks-muñoz kd, louie m, li y, chhun n, prendergast cc, ankola p. factors that influence neonatal nursing perceptions of family-centered care and developmental care practices. american journal of perinatology 2010;27:3: 193-200. australian neonatal nurses' perceptions of neurodevelopmental care griffiths na, galea ca,b, psaila ka,c a grace centre for newborn care, the sydney children’s hospital network, westmead, australia b cerebral palsy alliance, allambie, australia c western sydney university, parramatta, australia developmental observer • 2020 • 5 background infants admitted to the newborn intensive care unit (nicu) are at increased risk of developmental delay; additionally, they are exposed to sounds but relatively little language. language exposure, such as talking, reading, and singing, is essential for speech and language development. greater language exposure and shared reading in the nicu is associated with better neurodevelopmental outcomes.1,2 as such, the american academy of pediatrics (aap) recommends that parents begin sharing books with infants as soon as possible after birth. shared book reading can help parents promote literacy and reading achievement in their children; it also enhances parent infant bonding and reduces parental stress.3 intervening in the nicu encourages parents to continue reading to their infant post-discharge; however, such a book sharing program has not been carried out on a large scale in a heterogeneous and diverse population in the cincinnati region. relevance to nidcap this project supports development of relationships between parents and infants in a nicu. such early interactions, based upon responsive and synchronous experiences, may positively influence infant short-and long-term outcomes. staff involvement that embraces parental partnership builds trust and positive unit culture. embracing the synactive theory we know that infant behavior proceeds through continuous balancing of approach and avoidance behaviors across five subsystems, communicated as infant biobehavioral cues. understanding and utilizing these behaviors is key to the length and timing of book sharing with infants in the nicu, as we individualize our interactions to support the competence of each infant within their family’s supportive structure. aim the aim of this project was to increase the adoption of shared book reading between parents and infants by increasing the percentage of parents sharing books with their infants in the nicu and continuing that book sharing post-discharge. method all families from nicus in the cincinnati region from june 1, 2018 were approached. discharged families were administered an institutional review board (irb) approved questionnaire at their first clinic visit assessing home reading environment and shared reading practices, adapted from a validated measure and from nicu infant-shared reading literature.3 results/findings before starting the intervention staff and parent reading beliefs and behaviors were assessed, as were the home reading environment for infants recently discharged from the nicu. the pre-intervention outpatient parent survey clinic in 198 families showed that 143 (64%) had infants who were never or rarely read to in the nicu, while 64 (29%) never or rarely read at home. only 85 (38%) recalled having received anticipatory guidance on shared reading in the nicu, and very few (11%) recalled being shown how to read to their nicu infant. after adjusting for potential confounders, the frequency of reading aloud in the nicu was independently associated with the frequency post discharge (p<0.001). the nicu bookworm program was designed with the hypothesis that such a program would increase the frequency of book sharing in the nicu and at home post discharge. post intervention our data revealed that in 115 families, parents receiving anticipatory guidance increased from 38 to 60%. parents being shown how to share books with their infant increased from 11 to 56%. parents regularly reading to their child significantly increased in the nicu (34 to 54%). parents regularly reading to their child at home increased (71 to 75%), but significant change was seen in the high-risk group (parents who did not enjoy reading) from 46% to 72%. conclusion despite aap recommendations, there exist significant gaps on giving anticipatory guidance to parents in the nicu about shared book reading. healthcare professionals can play a significant role in increasing this practice. in our population a structured book-sharing program increases reading behaviors in the nicu as well as at home post-discharge, with the most significant benefit seen in the high risk group of parents who themselves do not enjoy reading. references: 1. braid s, bernstein j. improved cognitive development in preterm infants with shared book reading. neonatal network. 2015,34(1):10-17. 2. caskey m, stephens b, tucker r, vohr b. adult talk in the nicu with preterm infants and developmental outcomes. pediatrics 2014,133(3):e578-584. 3. lariviere j, rennick je. parent picture-book reading to infants in the neonatal intensive care unit as an intervention supporting parent-infant interaction and later book reading. journal of developmental and behavioral pediatrics 2011,32(2):146-152. using newborn individualized developmental care and assessment program (nidcap) philosophy and principles in the implementation of a nicu book sharing program lacina l, roux m , kessler c, jain v newborn intensive care unit, cincinnati children’s hospital medical center, cincinnati, oh, usa doi: 10.14434/do.v13i1.29081 16 • 2020 • developmental observer the republic of chile is a south american country occupying a long, narrow strip of land between the andes to the east and the pacific ocean to the west. chile is among south america's most economically and socially stable and prosperous nations, and a member of organisation for economic co-operation and development (oecd) with a highincome economy and high living standards. recently there have been demonstrations denouncing social inequality. in 2017 there were 219,186 births which is approximately 600 newborn babies born every day. approximately half of them are male. forty-two percent were born in santiago, the capital of chile. the child mortality rate is 7.1% with 41.2% occurring in the first day of life and 36% between 1-28 days. the neonatal mortality rate fell around 5% in one year from 2016 to 2017. the total fertility rate was just 1.6 in 2017 below average generational rate. at present, there are many immigrants, with around 10% of births occurring in this group. chile has a mixed public and private health system with approximately 70% of the population using the public health system, with the remaining 30% accessing the private health system. neonatal intensive care occurs in both public and private hospitals. most private neonatal intensive care units (nicu) have 24 hour free access for parents. unfortunately this does not happen in the public system where there is a lack of staff. nevertheless, i have been working with different professionals (midwives, ot, therapist) training and making changes. the clinica las condes (clc) where i work, is a private hospital where parents can stay the whole day with their babies, and siblings and grandparents are also welcome. we have many preterm babies many of whom are twins since this is a referral hospital for infertility treatments and high risk pregnancies. since 2008 we have been working with the nidcap concept in our unit. parents are encouraged to provide the care for their babies and we have an active skin to skin program. the preterm parents corporation, named neovidas, has been working with us to support the preterm parents at the clc & hospital santiago oriente and is open to offer help to other parents. they work actively with the health minister and have connections to parents abroad. each november they organize different activities for families and professionals to celebrate world prematurity day. every year i work with midwives, training new people and doing refresher courses for the other staff. for the past five years ninoska cancino, midwife (nidcap professional) and i have been working with different universities, pediatric societies and nurse’s colleges providing training programs in developmental care within the country. most of the health care professionals who have attended these programs have expressed an interest in foundational programs for developmental care such as family and infant neurodevelopmental education (fine). the clinica las condes is unfortunately not a nidcap training center but we work with this concept. our unit is the only one in chile that has certified nidcap professionals on staff. if requests for nidcap training are received i recommend for them to apply to argentina or spain for training. presently, we are working together with other spanish speaking trainers who can help us spread the nidcap philosophy. global perspective of developmental care – chile marcela castellanos, md pediatrician, neonatologist, nidcap professional, clinica las condes & hospital santiago oriente – dr luis tisne clinica las condes hospital santiago oriente “dr. luis tisné brousse doi: 10.14434/do.v13i1.29092 developmental observer • 2019 • 7 aims to describe the foundations necessary to develop a newborn intensive care unit (nicu) training and staff development plan that will effectively support the changes in environment and care required for successful implementation of developmental care in the nidcap model.1 to determine the research method which is most appropriate and the abilities that professionals need to implement nidcap in the nicu. the aim of this presentation is to focus on action research, reflection, and critical thinking as cornerstones of nidcap implementation. methods review of literature and results of author’s previous grounded theory qualitative research on critical thinking process.2 results nidcap is an evidence based model that focuses on system change.1 a change would require the acceptance of new ideas or a new structure. action research is methodologically flexible to the point that it encourages methodological triangulation/ pluralism approaches. the process seeks to have full engagement by researchers and participants. the process is truly collaborative. an action or change is the focal point of the process. the decision to implement the action or change is in the hands of the stakeholders. the conclusion and subsequent action must reflect the collective thinking of the group. early work is attributed to lewin, a social psychologist, who is cited frequently as the first person who coined the term action research. simplistically, lewin said that for a change to occur, individuals would need to unfreeze—give up their ideas about something or give up the dominant structure.3 they would then need to change. an important characteristic of action research is the empowerment of others. change may come in the form of individual or group empowerment, greater community capacity to solve shared problems, or transformed organizational structures. an important part of the change or action phase of the research process is reflection. data recorded during reflection are important contributions to the theory that emerges from the action research study.4 reflection is a very important skill for professionals within the nidcap model. it is a skill used in two contexts during events and after them. it involves the use of decision making and evaluation. reflection is a process whereby experience is examined in ways that give meaning to interaction; interaction and engagement are very important components of the nidcap model. reflection is most closely associated with human interactions and especially clinical events too. some reasons why reflection is important in nursing and in helping to implement nidcap in the nicu are: correcting practice, understanding self; others; professions, and challenging assumptions. there are two types of reflection: in action and on action in three levels: superficial, medium, and deep.5 one of the most popular models of reflection is gibbs’ model.6 in the nidcap model, developmental specialists need this ability for writing journal pages on his/her observation of premature and caregiver behavior and critical thinking, reflection, and action research as cornerstones of nidcap implementation hasanpour m, kakavand a school of nursing and midwifery, tehran university of medical sciences, tehran, iran. elements of action research method gibbs, g. (1988). learning by doing: a guide to teaching and learning methods 8 • 2019 • developmental observer to foster good relationships with other staff, as well as the infant’s family. reflection is a subset of critical thinking and one that is used in close association with experience. critical thinking is another cornerstone of nidcap implementation. according to the results of qualitative grounded theory research in iran, critical thinking is the art of thinking and the mental challenge of how you are thinking. it is an essential concept, a fundamental ability and necessary means for human evolution and the overcoming of the problems of life in society, workplace and education. it is also an essential ability to achieve self-efficacy, autonomy and professional development.7 decision making, leadership and ethical practice are all founded upon an ability to think critically. we use critical thought to select resources, to utilize knowledge and to evaluate evidence. traditionally, our thinking has been designed for routine, habit, automation and fixed procedure. but the problems we now face, and will increasingly face, require a radically different form of thinking, thinking that is more complex, more adaptable, and more sensitive to divergent points of view.8 the ability to think critically is considered an essential educational outcome for today’s college graduates9 and necessary to nidcap implementation. conclusion the goal of the nidcap model is to bring about a shift from protocol-based to strategic process thinking and from task-oriented to relationship-based care. to achieve these goals and implement nidcap, there is a need for professionals to be familiar with three cornerstones including: action research, reflections and critical thinking. it is recommended that medical and nursing schools focus on special training programs to improve these abilities in students, since creating behavior is easier than changing behavior. also, enhance these abilities in nicu nurses and medical staff through continuing education workshops before and during nidcap implementation. references: 1. als, h. program guide newborn individualized developmental care and assessment program (nidcap). ©nidcap federation international, 2015, rev 31 may 2018. 2. hasanpour m, oskouie f, salsali m.(2007) the process of critical thinking in iranian nursing education: a qualitative research. http://www.criticalthinking.org/pages/29th-conferenceconcurrent-sessions/868. 3. speziale & streubert, h. (2011). qualitative research in nursing: advancing the humanistic imperative. 4. brown, l. d., & tandon, r. (2008). action research, partnerships and social impacts: the institutional collaboration of pria and idr. in p. reason, & h. bradbury (eds.), the sage handbook of action research: participative inquiry and practice (2nd ed., pp. 227–234). los angeles: sage 5. price b. and harrington a. (2010).transforming nursing practice: critical thinking and writing for nursing students. learning matters ltd.co.uk. 6. dye, v. (2011) ‘reflection, reflection, reflection. i’m thinking all the time, why do i need a theory or model of reflection?’, in mcgregor, d. and cartwright, l. (ed.) developing reflective practice: a guide for beginning teachers. maidenhead: mcgraw-hill education (pp. 217-234). 7. elder l. and paul w r. (2002).critical thinking. new york, pearson education, inc. 8. emerson j r. (2007) nursing education in clinical setting. mosby, elsevier co, united state of america 9. current project underway at tehran university of medical sciences (tums) developing critical thinking of nicn students based on the practive of reflection. 2019 vol. 12 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “we are all visitors to this time, this place. we are just passing through. our purpose here is to observe, to learn, to grow, to love… and then we return home.” australian aboriginal proverb in conversation with heidelise als kaye spence, am in may this year i had the opportunity to have a conversation with dr. heidelise als in auckland, new zealand as she was the invited keynote speaker at the council of international neonatal nurses (coinn) 10th international conference. it was such an honour to have her speak and network with over 400 neonatal nurses from 23 countries. in a quiet corner of the hotel café we had a most enjoyable conversation. as heidelise sipped on her cappuccino she shared many stories, reflections and insights into nidcap and the impact it has on newborn infants and their families. i learned so much about this remarkable woman and the passion that has shaped her life. i would like to share parts of this conversation as i asked about her experience at the conference to trigger some thoughts about nidcap. ks: after three intense days at the conference would you like to share your overall impressions? ha: when i was invited and saw the conference theme, enriched family – enhanced care, i knew i wanted to attend. it was so in tune with the philosophy of nidcap. i was greetings from the editor it is with pride that i present this issue of the developmental observer. it has been a fascinating few months for nidcap and in this issue we showcase the expansion of the global work of nidcap. earlier this year i had the pleasure of attending the coinn (council of international neonatal nurses) international conference that was held in auckland, new zealand. this time it was particularly memorable as dr heidelise als was one of the invited keynote speakers. i must say heidi was in her element as nurses from many of the 23 countries represented sought her out for photographs and short conversations. she was always surrounded by groups of enthusiastic nurses, many of whom had studied her work in their university courses and knew what an honour it was to meet her. i took the opportunity to have a conversation which is included in this issue. this was enlightening for me as i have known heidi for nearly 20 years and yet this conversation revealed a different side to her. this issue also features stories about nidcap training, from the point of view of a novice nidcap trainer and a nidcap trainee challenged by her advanced practicum. these stories from dalia silberstein and kristen james nunez challenge us to think about our own practice and training. hopefully these stories may encourage others to share theirs. we also feature a profile on dominque haumont who provides us with table of contents in conversation with heidelise als ........ 1 editorial ...................................................... 1 family voices ............................................. 4 a novice trainer's look: shining moments and early lessons learned ...... 6 advanced practicum experience .......... 8 nidcap profile ......................................... 11 global perspectives of developmental care belize .............................................. 14 nidcap training centers around the world ................................................... 16 the science desk .................................... 18 published resources ............................... 20 nidcap on the web ................................ 25 dr. als giving her keynote address at the council of international neonatal nurses (coinn) 10th international conference. continued on page 2 continued on page 3 nidcap® is a registered trademark of the nfi, inc. ©nidcap federation international, 2019. 2 • 2019 • developmental observer in conversation with heidelise als (continued from page 1) happy to see the concurrence of all strands of the presentations and the themes which were complimentary to nidcap. each presentation was well thought out; the presenters were articulate with a certain seriousness and sincerity. i found the science presenters were diligent in their longitudinal research, the follow-up years and the large numbers of infants was impressive. seeing the outcomes of our work causes us to pause and reflect. the nursery world is so different from the womb. it’s like witnessing the evolution of our own species and looking at it from the outside. it was wonderful to hear the parents present; they have so much to teach us. ks: many of the delegates were impressed that you were in attendance for each session and you were taking notes. ha: why wouldn’t i? i have so much to learn. ks: what did you think of some of the futuristic presentations, for example the one on the artificial womb? i noticed you were quite absorbed. ha: i found it a thoughtful and sensitive presentation and the intellectual drive of the neonatologists and physiologists is impressive; they haven’t given up for nearly 50 years. this gives babies a chance, the more we learn the better we can make the experience for the newborn. you know i was present at some of those early trials in philadelphia. it was early in my career, around 1968 and i had come to the usa and had just completed my master’s degree. for my doctoral work i was in the nursery watching babies and doing pre-publication brazelton observations. i remember one of the pediatricians asking me what i was doing and i explained i was observing the baby. she asked if i would like to see babies more fascinating than the fullterm infants i was observing; of course i was curious, so she took me into a room on the side of the nursery. the room was full of various equipment, oxygenators, monitors and, in the middle, a table for the immature baby, who was about 28 weeks previable in those days. i was given the job of bagging the baby, who was flat on the table with the limbs restrained. i asked if we could help the baby tuck and place the hands to face and arms midline. as she spoke heidi took on the flexed position demonstrating the ideal position for the baby’s limbs and hands. she was demonstrating what she wanted to happen. i was told this was not possible as it could interfere with the tubes and wires! ks: did this influence you in any way on your early concept of nidcap? ha: yes, this was my first encounter with preemies. it made me think about their experiences and how they are looking for support and nurturing when surrounded by all the technology. developmental care and nidcap started. there were many challenges to getting these concepts into practice at the bedside and if you want to overcome those barriers you have to have the right persons. the psychologists have the ideas, but the doctors and nurses actually do it in practice. early on there were some real nursing champions (pat linton and gretchen lawhon) who were given the opportunity when developmental specialist positions were created. these were the early adopters, who helped make it happen, who made nidcap happen. ks: what to do you see as the impact of nidcap? at this conference as well as globally. ha: the number of nurses who spoke of their knowledge and awareness of my work surprised me. people seem hungry for information and they appear dedicated in using this for their interactions. you know this is only the second nursing conference to which i have been invited. the amount of research that has been accomplished is fantastic and there is an appreciation of the impact on the brain and the changes that occur. however, there remains a lack of recognition in one’s own local environment. this a semi-annual publication of the nidcap federation international ©2019. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science column editor debra paul otl contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer heidelise als enjoying the gastby dinner at the conference developmental observer • 2019 • 3 manifests in lack of support for development or research. in order for early intervention work to succeed, there must be support and this includes financial support. ultimately there are costs to the community, supporting families with babies who, early on, experienced less than optimal care and now require life-long support. ks: as one of the neonatologists said on the opening day – the nurses at the conference have a once in a lifetime opportunity at the conference to hear you speak. you received a standing ovation following your last presentation at the conference. how did this make you feel? ha:: very humble. maria maestro’s beautiful video had a lot to do with it. ks: i think you gave many hundreds of nurses a glimpse of what nidcap is and the work and research that have gone into making it the model of choice. you also showed them that you are also prepared to have fun. did you enjoy the gatsby dinner? ha: yes, it was fun, but i can’t dance the way i used to. i enjoy watching the young people enjoy themselves. ks: what would you say is your ‘pearl’ of nidcap? ha: everything matters, for what we experience once we can’t do it over or change what has happened. we always make the best of what we experience, and nothing is without cost. we all make mistakes and if we reflect and think about it we will figure it out so it won’t happen again. i have learned a lot from being the mother to a child who was different from birth. there is a consciousness that makes life enjoyable, happy and good. a baby has no way to pretend, so you must consider how you touch a baby, work with a baby, and the voice you use, as these all have an effect on the baby and potentially cost the baby. you must be aware and keep your focus on the baby. ks: nidcap was born 40 years ago what do you see as the biggest change that has occurred for nidcap over the past 40 years? ha: awareness of nidcap varies greatly and depends on where you come from. there must be more articulation and communication about the detail required. for example, the reports cannot be condensed, as you want the detail that describes the core of the baby, the observations and the recommendations. the baby’s goals are essential for the report. there have been many changes and more are required. a psychologist developed nidcap and is free of the burden of keeping the baby alive. it is the doctors and nurses who implement nidcap in partnership with the parent. if nidcap is embraced by nurses the direction can quickly change, the nurses drive the change. we have the unifying umbrella of the nidcap nursery program (nnp) to help with the system change. this together with programs such as fine and nidcap will ultimately benefit the baby and the family. of course if we are going to have programs to support the baby and family we also must support the staff. they have to have time away from the bedside for time out, self-awareness and reflection; this is very important and has to be part of the implementation plan. globally, we are expanding and we must engage those drivers who are interested and prepared to embrace nidcap and respond to requests for training. i think we are still figuring it out. ks: thank you, heidi, this has been very enlightening for me. i must say the video you showed in your presentation really had an impact on the audience. to see all those interventions being done, eye exam, cardiac echo while the baby was skin-to-skin with little reaction was truly nidcap. ha: yes, maria maestro from spain allowed me to share this video. it shows how a neonatologist, who is a nidcap trainer together with a nidcap professional nurse, can provide these opportunities that embrace nidcap and ultimately benefit the baby and mother. ks: on that note, thank you for your generosity of time for this conversation. we said our farewells and i watched this diminutive and powerful woman walk towards the elevator. as she did so, a group of nurses walking by turned and chatted amongst themselves and i overheard ‘that was heidelise als, wasn’t she inspirational’. photo of h.als presenting courtesy of coinn. insight into the challenges of establishing nidcap and provides many ideas of negotiating health systems. we also have an enlightening story from amanda n'zi sharing her story of kayden's journey. we have introduced a new regular feature of global perspectives of developmental care. the aim is to explore different countries and health care systems and how developmental care and nidcap is being implemented. we start with belize and melissa johnson gives us her perspective of the work she and her team have been doing there. we look forward to moving around the globe in future issues. our regular feature from the science desk returns after great feedback from the last issue. jeff alberts shares a light on research on fathers. other regular features of profiling nidcap training centers continue and this issue we feature the australasian nidcap training centre. as editor, i welcome your feedback on the content and look forward to reading your letters. send to: developmentalobserver@nidcap.org i would also like to acknowledge the encouragement from the editorial team and their hard work in generating ideas and reviewing the content for each issue. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia greetings from the editor (continued from page 1) 2017 vol. 10 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “cherish your human connections: your relationships with friends and family.” joseph brodsky our family’s journey: a story of love, hope, faith, and strength by marnie eveslage and patty haler, rn, rnc-nic1 1 staff nurse, mayo clinic, rochester, mn my husband, jeff, and i are honored to share our story about love, hope, faith, and strength. these four concepts kept us going through some of the hardest and happiest days of our lives. we hope other parents and families find comfort and peace after reading our story. we feel this confirms that miracles do happen, and that even in the most difficult situations, strength and resiliency exist in all of us. our journey in the mayo clinic newborn intensive care unit (nicu) began after we welcomed our beautiful daughter, brinley grace eveslage, into the world on july 14, 2015 at 12:32 pm. she weighed 5 pounds 11 ounces at 33 weeks gestation. it was a groggy monday after a busy weekend with a baby shower my awesome sister planned for us. i was uncomfortable after developing lower back pain. i didn’t sleep much sunday night and waddled into work. i planned to go home early and treat myself to a massage. how on earth was i going to survive another seven weeks? my coworkers planned a surprise baby shower so i stuck out the day. what i did not realize was that i was in active labor. i left the clinic, where i work as a medical social worker, to change clothes and to feed the dog, only to return to triage that evening. i was convinced i was not in labor; i did not feel a single contraction but something just felt off. “surprise, you are dilated to seven. you are having a baby.” tears flowed down my face in fear as i knew it was too soon. i was given medication to try to stop delivery but i threw it up. contractions progressed quickly and brinley knew she needed to come out as, unknown to us at the time, her intestine twisted and ruptured before birth. we were blessed with a smooth vaginal delivery. brinley was swept quickly into another room where the neonatal team patiently waited. they, too, were surprised to see her with a blue and distended tummy. we expected a premature baby who would be healthy. our world changed as the neonatologist quickly explained she needed exploratory surgery and to be moved to the nicu. we were able to meet her but could not hold her right then. she was beautiful with big eyes and was exploring the sound of our voices. we held her hand and wept with overwhelming emotion. not continued on page 2 table of contents our family’s journey ................................ 1 preemie project ......................................... 4 spontaneous motility of preterm and full term babies ........................................ 6 our path to nidcap nursery certification ............................................. 10 nidcap training centers from around the world ................................................. 12 developmental resources ..................... 14 jeff, marnie, and brinley 2 • 2017 • developmental observer a second was wasted as they made arrangements for me to be moved to the hospital at the saint marys campus of the mayo clinic to be near her in the nicu. that evening, prior to her surgery, we met with the neonatologist and surgical team. we knew something was wrong and there was the chance there would be nothing left of her intestine to save. we sat in my hospital room while we waited for the news. to pass the time, a nurse instructed me on how to pump milk. i felt an overwhelming calm and stillness, repeating to myself that, “she came early for a reason. everything has a purpose. she has to be okay. please god let her be okay.” i had faith that she had to make it through and she did. we were relieved they were able to save one third of her intestine. we knew she had a tough road ahead but were deeply grateful that our baby girl was still with us. we expected she would be on total parenteral nutrition (tpn) or intravenous feeding for the first two to three years of her life and stay in the nicu for three months or longer. she had an ostomy bag until she was strong enough for surgery to reattach her intestines at around eight weeks. none of this mattered as long as she was okay. she was our miracle baby. we celebrated her life and had hope for the journey ahead. the next three months were filled with joyous days as we watched her grow and become an amazing little person. her strength and feistiness were apparent right away. she did whatever the doctors asked of her. we spent countless hours holding her, talking to her, reading to her, singing, and praying. i loved coming to the nicu to do kangaroo holding and allow myself time to rest with her. i cherished every second of it. one of the best days was when the gastrointestinal (gi) team gave the all clear to start dry nursing at two weeks. i had to pump first because her gut could not tolerate a large amount of milk at once. this meant so much because she wanted to eat so badly. she had been communicating her desire to eat; it was so hard not to feed her. the dry nursing allowed her to soothe herself naturally while bonding with mama. it was great for both of us. she had a feeding tube with a slow constant drip until she was ready for bolus feedings and eventually a bottle at six weeks. life was also hard in the nicu. we had tough days watching her barely gain weight. we struggled with keeping her ostomy bag in place. at two weeks she was diagnosed with hydrocephalus or fluid on the brain. this was devastating news. i remember feeling as though i could not cope with this too. i did not want this for her. i had nothing in me but to sob. i will never forget this day. the social worker came to reassure me that i did have the strength; she normalized my grief response. these were comforting words from a colleague and friend. what i remember the most is sitting in silence with another mother as we sat and held our babies. we just cried. knowing that she felt my pain and suffering was so comforting. she did not need to say anything, and frankly, we did not speak the same language. i didn’t need her to say anything. her presence in the room was enough. we all tried to respect each other’s space and privacy. you don’t have to say anything to each other maybe a glance, a smile. we would say hello in passing in the hallways or the parking ramp, and maybe chat briefly. we got to know a few families with common medical struggles. we all knew this sucks. what is there to talk about? we knew so much about each other already without talking. part of me knew i only had enough brinley in the newborn intensive care unit a semi-annual publication of the nidcap federation international ©2017. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor diane ballweg, msn, aprn, cns, rnc-nic associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer developmental observer • 2017 • 3 strength for myself and my family. i could not be a strong support to others too. not right now. how do you adjust to the challenges of nicu parenting? how do you support each other, yourself, and your child? we were surrounded by support from our family, friends, and coworkers. they cooked us meals, bought us gift cards, parking passes, started a fundraising page-you name it. they came to visit and filled brinley’s bedside with love. i documented her progress on the caring bridge webpage to keep everyone informed. this was all helpful, but my baby was not home with me. nighttime was the most difficult. i left her alone in the care of someone else. i would wake up to pump, not to feed my baby. i found strength in focusing on the moment. this is what needs to happen for brinley. i had to stop myself from thinking about what should be happening and what was “normal.” this is our normal. we quickly built a routine. my husband would come in before work. i would come in shortly after to spend the morning and catch rounds. most days we got lunch together. i would update him on her progress. i would go home for a few hours to get things done and return in the late afternoon. we would eat dinner at home and return to spend the evening together as a family. this routine helped the days pass. we thanked god for his presence in our lives and dug deep to keep faith. we built a strong relationship with many of the nurses and medical team. it helped to have consistent nurses, like patty, that grew to know brinley well and us. they taught us first how to be a part of her caregiving and we quickly became independent in providing care to brinley. we brought her own outfits to dress her and her own blankets, rather than the hospital’s sleepers and blankets. you wouldn’t think this mattered, but i felt like we were providing for her – we were her parents. i laundered her clothes and brought books from home, anything to help normalize the situation. the nicu at saint marys had four open-bay rooms. some of those rooms had two enclosed rooms within the open bay that were used for smaller or sicker babies. we were in both room types depending on brinley’s needs. in the open bay rooms it was difficult to have a small space with another family right next to you. i craved alone time and peace and quiet. i dreamed about moving her to the intermediate special care nursery (iscn). we advocated for this and at five weeks she moved into a beautiful nursery with large private rooms. it was a vacation from the nicu. she did well there, though it was different. we built relationships with new nurses and had the same medical team, and at the same time i missed the nicu nurses and wanted to celebrate brinley’s victories with them. they sat with us through some of the most difficult days. they were our nicu family. brinley did so well with feeding in the iscn that she went off the tpn and was on full bottle feedings at seven weeks. she was approved for intestinal reattachment surgery a week earlier than expected. i had mixed emotions about this as it meant we would start all over with feeding; back to what seemed like starving my baby until she could get to full feedings. when we were finally able to feed her, i wasn’t sure if i could do it again. i did not want to put her through it, and we would be back at the nicu. i was, however, also happy that she grew and was on track to having her intestines reattached. it was time to get rid of the ostomy bag. surgery went well. we celebrated that her intestine grew fifteen centimeters over the course of seven weeks. her surgeon was impressed and had hope that she would have more intestines to absorb nutrition. we celebrated her first passing of gas and stool. this meant her gut was working. all of this positive energy is what kept us going. it felt good to be back at the nicu. we were home with our nicu family who knew us. the smell, the dim lighting, the coloring everything about it was good. i did not realize it until we came back how important our nurses were to us. the relationship and understanding of our journey were so comforting. it took four weeks for brinley to handle feedings after surgery. she eventually went off the tpn with a combination of breast and bottle feedings with pectin and formula for extra calories. she finally went home at eleven weeks. she did not require the tpn for two to three years like her doctors thought she would. she really is a little miracle. soon she will be two years old and is a happy, rambunctious toddler with spunk. she knows what she wants and likes, and is not afraid to let you know. we are forever grateful for her strength. our message to other families is to accept help from others. make time for yourself. eat, go home and sleep, exercise, talk to your spouse and make time for each other. lastly, create your own normal. make the best of this experience and the amazing medical team who are there to take care of you and your baby. this is your time to just be present with your little one. no laundry, cleaning, or cooking. just be. our time in the nicu was some of the hardest and also most joyous days of our lives. we found strength to remain positive; we held onto hope and faith and flooded brinley with love. there was no better place for us to be. we will never forget our time there and cherish the relationships we built with our care team. we look forward to seeing everyone at the annual summer nicu reunion. brinley at home 4 • 2017 • developmental observer in the more recent past than i can believe, premature babies spent weeks and sometimes months alone in incubators, until finally they were deemed stable enough to be held by their parents who waited with bated breath for that single moment to be determined. although the theoretical basis existed and the scientific research had begun, the actual practice of concepts like family-centered care and relationship-based care were in their infancy in some newborn intensive care units (nicu). how well your patient was doing and therefore how well your day was going was determined by numbers, measurements and calculations. as a novice nurse accustomed to working with adults, i instinctively looked for ways to connect with my tiny patients. even then, a few years away from knowing much about nidcap and starting my nidcap training, i tried to take my time and observe the babies in my care, to watch and see what they might be trying to tell me, what they might need from me. i also certainly felt a strong sense of empathy toward the mothers, fathers and siblings, who were going through one of the most difficult, heart breaking experiences of their lives. even though our unit did not specifically have a system where nurses participated in primary care, many nurses did request to be assigned primarily to certain babies. like me, they were looking for ways to connect and often saw the benefits of a primary care relationship for everyone involved. i usually cared for only one or two babies at a time and found it quite fulfilling to get to know the babies very well and to grow a relationship with their families, as this allowed me to better support them. in some cases, parents kept in touch and let me know how they and their children were doing at home. it always made me feel good to see the pictures of these little people, thriving, despite the obstacles they had to overcome. that is where i drew my strength to go back to work each day to support the families at the start of their journey. as i look back over the last 16 years in the nicu, i think about the many special babies and their families with whom i have been honored to connect. each and every one of them taught me something important: things i couldn’t learn from books or classes and things that helped shape me into the nurse i am today. late last year, a local photographer, ashley sykes, started a fundraising project called the preemie project. the project began as a way to honor the story of her friend’s premature baby celebrating his first birthday and then grew into one that would raise money and awareness for premature birth. her amazing project is a celebration of the lives of many premature babies from the edmonton, alberta area. the project allowed families, and sometimes the children themselves, a chance to share their stories. i was surprised and excited when i was contacted by preemie project: raising awareness of premature birth through photography andrea nykipilo, rn bscn clinical nurse educator, northern alberta neonatal intensive care program developmental care specialist, nidcap trainer-in-training royal alexandra hospital, edmonton, ab, canada erik and andrea celebrate their special relationship “she allowed me as a mom to feel competent and confident in developing a relationship with my son who was two pounds and hooked up to more tubes and wires than you could imagine.” developmental observer • 2017 • 5 renee lukie, the mother of a former patient, to participate in this project and pose for a photograph with her now 14 year old son who was born at 24 weeks. what an amazing way to celebrate his life, as well as our special relationship. ashley’s project documented the family’s story, which i share here in its original format from ashley sykes’ preemie project blog post at https://ashleysykesphotography.com/. name: erik gestational age: 24 weeks weight at birth and length: 976 grams and 35 centimeters long current age: 14 renee: we were told when erik was born that he was born at the cut-off date for gestation and it was going to be a tough battle but he was feisty. who knew such a small baby could be feisty, but they were right. the christmas season was the hardest our family had ever been through, with a two year old at home and our little man in the hospital fighting for his life. on christmas eve, we received a phone call that he had an infection and that they were bringing the priest in to bless him as they were not sure he was strong enough to fight through the e-coli infection. these days were the darkest days of my life as a mother. i had hope and believed that a christmas miracle could happen but my heart was breaking from the inside out. there was a lot of staff coming and going in erik’s care over the christmas holidays which was very hard to cope with when seeking consistency during a difficult time. we requested a primary care team so that we could limit the number of different people on our team in supporting erik and ourselves. this is where our christmas miracle happened and andrea nykipilo came into our lives. she became erik’s primary nurse which meant when she worked she would be placed with him and a few other babies in our pod. she has a gift. she allowed me as a mom to feel competent and confident in developing a relationship with my son who was two pounds and hooked up to more tubes and wires than you could imagine. she took the time to teach, support and listen each and every shift. when she worked nights she was always there to take my bedtime phone call and was honest with how he was doing since i had left and what to expect in the morning for rounds. she helped me with this first real bath and introduced us to kangaroo care which was vital in erik’s growth and development. she understood the importance of family and helped us with introducing and having a two year old in the nicu. she is our angel on earth and we are forever grateful for her. erik came home at four months old weighing 4 pounds 11 ounces. he overcame many obstacles during this time including infections, complications, blood transfusions and various medications to help him grow and be as healthy as possible. the day we brought him home was so exciting and scary at the same time, knowing we wanted to be home but would miss the support of those who had helped us along the way. we thought we had brought home a baby who was going to be perfectly healthy, however, within a couple of months erik was showing us signs that something was wrong, and together with our amazing pediatrician, dr teoh, erik was admitted to the stollery children’s hospital in edmonton for further testing resulting in erik having his first of three airway surgeries. we spent much of 6 months in and out of the hospital for surgeries and appointments for his feeding tube and medications. erik was in the pediatric intensive care unit (picu), intermediate care environment (ice) ward and pediatric wards for weeks at a time. again the support was amazing and our days were filled with learning and understanding erik’s new reality with a chronic lung disease that affected his airway. there were several home care visits, emergency room visits, hospital stays and the need to rely on family from afar and new friends in our new community. it truly took a village to get us to where we are today. erik will be 14 years old next week. he is 5 feet 7 inches tall, 127 lbs. and has size 10 feet. he is witty, smart, loving and a true miracle. every day i am thankful for all he has taught us and that he offers our family. he just got his report card and it makes my heart smile to see his teachers write what a great kid he is and how hard he works at school, the good grades are a bonus but not the icing on the cake for us. for the second year in a row, erik’s teammates from his hockey team have voted him assistant captain for his team. erik is a quiet leader with a heart of gold. his health has really come along; we haven’t had a hospital stay or visit since he was nine years old (touch wood)! he does have low tone and finds that his muscles work better once he is warmed up when on the ice. being an active child has helped his development in so many ways. we are proud of our son and the young man he has become. he truly is a gift that we are so thankful for. the journey has been hard but i wouldn’t change it for anything. i hope our story can give someone hope and know that there are better days ahead. they are not alone and that the community in the nicu is there to help and support you. andrea: i, too, am so very proud of erik and very thankful to have his family’s story interwoven in my story. i believe it is very important to share the human side of the very technical and often medically-focused area of newborn intensive care and hope it inspires others to find the connections with those around them in meaningful ways. to all the extraordinary nurses and other professionals out there taking the time to connect with babies and families, i applaud you. know that you make an unbelievable difference to these families. blog credit and photo credit to ashley sykes photography: https://ashleysykesphotography.com/ and the lukie family for allowing me to share our story and photos. 6 • 2017 • developmental observer spontaneous motility of preterm and full term babies fabrizio ferrari1, natascia bertoncelli2 1 professor in pediatrics, head of the division of neonatology and nicu, head of the maternal infant department, university hospital of modena, modena, italy 2 developmental therapist, nidcap trainer, neonatal intensive care unit, university hospital of modena, modena, italy it is now accepted that the central nervous system (cns) produces an extraordinary repertoire of complex behaviors without any external stimulation. one of these consists of a number of specific motor patterns that can be observed in fetuses and preterm and full term babies.1 their central nervous systems are capable of producing a range of behaviors which also include very complex motor activities, among which general movements (gms) are the most frequently observed.2 contemporary neurological assessments consist of two types of items: those related to spontaneous behavior such as gms and those related to elicited responses. since the 1970’s prechtl and his co-workers have focused their attention on the spontaneous movements of the fetus using ultrasound scans. they recognized that spontaneous movement could be distinguished in movements that were clearly constant in form and were therefore easily recognizable every time they occurred. prechtl defined these sequences as “movement patterns”. with the aid of ultrasound he was able to identify several fetal movement patterns such as startles, gms, isolated limb movements, twitches, stretches, breathing movements, hiccups, yawns, head rotation, head flexion, sucking and swallowing movements, among others. the changes of fetal position in the uterus, which elicit fetal trunk rotation, gms and alternating leg movements, characterize ontogenetic fetal adaptation and have an adaptive function during prenatal life.3 general movements emerge as early as nine to twelve weeks postmenstrual age (pma) and look complex and differentiated from the very first moment they appear (table 1). there is an amazing continuity in the development of the prenatal motor patterns during the first two months after birth,4-5 with very few changes in the form and pattern of gms despite the huge changes in the environment. the form seems not to be influenced by the intrauterine nor the extrauterine environment. gms continue to be present during the whole preterm period and they are seen up to the age of five to six months post-term age (pta). thus the young nervous system of the fetus generates these movement patterns without being stimulated. in other words, gms are endogenously generated. they reflect the spontaneous activity of the brain and are the most frequently occurring and the most complex motor patterns observed from birth up to five to six months pta. it is likely that gms are produced by complex nervous networks, the so-called central pattern generators (cpgs) located in different parts of the brain and at various brain levels, but especially in the higher parts of the medulla and in the brain stem. breathing, sucking, chewing, eye movements, swimming, crawling and walking are other spontaneous motor activities that appear to be endogenously generated (i.e. generated without any recognizable external stimulus). the combination of these motor activities varies according to the ongoing behavioral states of the newborn baby. according to prechtl’s definition of behavioral states 1 to 5, during state two (active sleep), irregular breath10 weeks 12 weeks 14 weeks 20 weeks startles startles startles startles gms gms gms gms isolated arm movements isolated arm movements isolated arm movements isolated arm movements isolated leg movements isolated leg movements isolated leg movements isolated leg movements hiccup hiccup hiccup hiccup — breathing movements breathing movements breathing movements — hand-face contact hand-face contact hand-face contact — head retroflexion head retroflexion head retroflexion — head anteflexion head anteflexion head anteflexion — head rotation head rotation head rotation — stretch stretch stretch — yawn yawn yawn — — sucking and swallowing sucking and swallowing — — — eye movements table 1 reproduced with permission of mac keith press10 table 1. fetal motor repertoire by postmenstrual age developmental observer • 2017 • 7 ing, slow and rapid eyes movements and body movements are fired by specific cpgs. during state one1 (quiet sleep), regular breathing and the absence of eye or body movements reflect the different neural mechanisms that serve to actively inhibit (or modulate in the case of respiration) these motor activities from higher cortical and sub-cortical structures. the assessment of gms was standardized and validated in a tool designed for the assessment of spontaneous motor behavior of newborn babies by prechtl and co-workers, during the late 1980’s.5-7 this non-intrusive tool is based on the observation of spontaneous non-elicited movements of the newborn baby, either preterm or full term. prechtl and co-workers demonstrated that gms in particular are an excellent marker for early brain impairment and dysfunction.8-12 what are general movements? general movements involve the whole body in a variable sequence of arm, leg, neck and trunk movements. they wax and wane in intensity, force and speed, and have a gradual beginning and end. every body part starts to move with a sequence, which changes continuously and the movement spreads all over the body. in the same way, the movement sequence gradually decreases and the baby becomes restful. rotation along the axis of the limbs and continual changes in the direction of movement make gms fluent and elegant and create the impression of complexity and variability.9 preterm age gms are similar to those of the fetus: they are of large amplitude, often of fast speed and are frequently accompanied by lifting of the pelvis (figure 1). at term age, they are smaller in amplitude and show the so-called “writhing” character that gradually disappears, while “fidgety” gms emerge from six to nine weeks pta.10-11 fidgety gms are small movements of moderate speed and of variable acceleration of all body parts in all directions. they are observable when the baby is awake, except during fussing and crying. they may be seen as early as six weeks pta and are typically observable starting from nine weeks pta, lasting until twenty weeks pta. many other movements can be observed simultaneously with fidgety movements in healthy three to five month old babies, such as hand-hand contact, hand-hand manipulation, hand-mouth contact, foot-foot contact, fiddling, and leg lifting.10 among the other movement patterns, the gms are the most frequent, but also display the most complex pattern. it is likely their complexity makes them more vulnerable and therefore more sensitive to brain dysfunction. brain lesions affect the quality rather than quantity of gms, as has been demonstrated by various studies.8-12 when the cns is impaired, the gms lose their main three characters: complexity, variability and fluency. there is only one exception to this rule: severe perinatal asphyxia is accompanied by a transient phase of hypokinesis: i.e. absence of recognizable gms. in the case of brain lesions, the three main patterns of gms abnormalities are characterized as poor repertoire, cramped-synchronised or chaotic. fidgety movements can be either abnormal or absent. abnormal fidgety movements are exaggerated in speed and amplitude and are jerky.9 a poor repertoire gms pattern is the most common abnormality and occurs during preterm, term and early postterm age. the sequence of movements of the body parts is monotonous and repetitive and the movements lack the complexity and variability seen in normal gms (figure 2). the predictive value of poor repertoire gms is low because poor repertoire gms can be followed by normal, abnormal or absence of fidgety movements. when abnormal gms are followed by figure 1. normal gms: example of a variable and complex sequence of normal gms of a preterm baby reproduced with permission of mac keith press15 8 • 2017 • developmental observer normal fidgety movements, a recovery from brain lesions and a normal outcome are expected. when the fidgety movements are absent, on the contrary, cerebral palsy is very likely to occur. the absence of fidgety movements is highly predictive for later neurological impairments.11-12 a cramped-synchronized gms pattern is also a marker of severe gms abnormality. movements appear rigid and lack the normal smooth and fluent character. all limbs and trunk muscles contract and relax almost simultaneously (figure 3). if this abnormal character appears early, persists for weeks and is accompanied and/or followed by no fidgety movements, the development of a spastic form of cerebral palsy is predictable.9-13 a chaotic gms pattern is a rare abnormality. movements of all body parts are abrupt, of large amplitude and occur in a chaotic order. babies with chaotic gms often develop crampedsynchronized gms a few weeks later. to provide a reliable assessment of gms, the recording method must be standardized. the baby is videorecorded in supine, with bare arms and legs. during preterm age, it is necessary to collect at least three gms for the reliable assessment of the spontaneous motility. after term age and older, five to ten minutes of optimal videorecording are enough to make the assessment. it may be advisable to save the videorecordings at the different ages in order to have the developmental trajectories of the baby.10 the diagnostic and prognostic assessment needs repeated longitudinal observations of gms. the quality of gms is repeatedly scored during the preterm, term and post-term period until about 20 weeks pta to obtain the individual figure 2. poor repertoire gms: example of a repetitive and monotonous sequence within the same gm of a preterm baby figure 3. cramped-synchronized gms: example of the synchronous and cramped character of gms of a preterm baby reproduced with permission of mac keith press15 reproduced with permission of mac keith press15 developmental observer • 2017 • 9 developmental trajectories indicating the consistency or inconsistency of normal or abnormal findings (figure 4).10 generally, a baby is videorecorded every two or three weeks to have a reliable developmental trajectory. the analysis of gms is based on visual gestalt perception, which is a powerful scientific instrument to assess complex phenomena like gms. for this reason, the gms observer must not pay attention to details during gms assessment and consider the baby as a whole.14 summary the gms assessment is a non-intrusive, time saving and low cost technique. it represents a change in paradigm from the traditional testing of reflexes and responses elicited by external stimulation, toward a diagnostic and prognostic tool based on the assessment of endogenously generated spontaneous motility for the detection of specific neurological signs highly predictive for the later development of cerebral palsy.13 gms assessment should be a major neurological item in all the schemes of neurological examination. every year, the gms trust team provides standardized basic and advance gms training courses, lasting three and a half days. the website for information is: http://general-movements-trust.info/ references 1. prechtl hfr, fargel jw, weinmann hm, bakker hh. posture, motility and respiration of low-risk preterm infants. developmental medicine & child neurology. 1979; 21:3-27. 2. prechtl hfr. fetal behaviour. in: hill a, volpe j, editors. fetal neurology. new york. raven press, 1989;pp 1-16. 3. roodenburg pj, wladimiroff jw, van es a, prechtl hfr. classification and quantitative aspects of fetal movements during the second half of normal pregnancy. early human development. 1991; 25:19-35. 4. prechtl hfr. prenatal and early postnatal development of human motor behaviour. in: kalverboer af, gramsbergen a, editors. handbook of brain and behaviour in human development. amsterdam: kluwer, 2001;pp 415-427. 5. cioni g, ferrari f, prechtl hf. posture and spontaneous motility in fullterm infants. early human development. 1989; 18:247-62. 6. hadders-algra m, prechtl hfr. developmental course of general movements in early infancy. i. descriptive analysis of change in form. early human development. 1992; 28:201-213. 7. prechtl hfr. hopkins b. development transformations of spontaneous movements in early infancy. early human development. 1986; 14:233-8. 8. prechtl hfr. qualitative changes of spontaneous movements in fetus and preterm infant are a marker for neurological dysfunction. early human development. 1990; 23:151-58. 9. ferrari f, cioni g, prechtl hf. qualitative changes of general movements in preterm infants with brain lesions. early human development. 1990; 23(3):193-231. 10. einspieler c, prechtl hf, bos a, ferrari f, cioni g. prechtl’s method on the qualitative assessment of general movements in preterm, term and young infants. clinics in developmental medicine no. 167. mac keith press london 2004. 11. prechtl hfr, einspieler c, cioni g, bos af, ferrari f, sontheimer d. an early marker for neurological deficits after perinatal brain lesions. lancet. 1997; 349:1361–1363. 12. ferrari f, frassoldati r, berardi a, di palma f, ori l, lucaccioni l, bertoncelli n, einspieler c. the ontogeny of fidgety movements from 4 to 20 weeks post-term age in healthy full-term infants. early human development. 2016; 103:219-224. 13. ferrari f, cioni g, einspieler c, roversi mf, bos af, paolicelli pb, ranzi a, prechtl hf. cramped synchronized general movements in preterm infants as an early marker for cerebral palsy. archives of pediatrics & adolescent medicine. 2002; 156:460–467. 14. lorenz k. gestalt perception as a source of scientific knowledge (english translation of a german paper of 1959). in: lorenz k, editor. studies in animal and human behaviour, vol ii. london: methuen, 1971;pp281-322. 15. ferrari f, bertoncelli n. new advances in the study of the motor behaviour in preterm and term infants. clinics in developmental medicine no. 190. mac keith press london 2011. figure 4. individual developmental trajectory reproduced with permission of mac keith press10 trajectory of a preterm baby born at 28 weeks postconceptual age. pr gms in the preterm age, cs at term and early post-term age are followed by absence of fidgety movements and subsequent cerebral palsy. wk: weeks. n: normal gms. h: hypokinesis. pr: poor repertoire. ch: chaotic. cs: cramped synchronised. af: abnormal fidgety movements. f: fidgety movements. f-: absence of fidgety movements. 10 • 2017 • developmental observer the department of neonatology of valenciennes obtained certification from the nidcap nursery assessment and certification program (nnacp) in 2016. our journey began in 2005 when we started nidcap implementation, thanks to the training and benevolent support of dr. nathalie ratynski from brest, france. our work was reinforced in 2011 by the creation of a nursery nurse advisor position. many changes in our neonatology service supported our path to nnacp certification. the opening of the kangaroo unit in 2005, along with the extensive skin-to-skin practice in all sectors of the unit including maternity, has proven advantageous. in addition to benefitting babies, widespread support has been offered to families coming from a socially vulnerable population. furthermore, the maternity and neonatology departments received baby friendly hospital initiative (bfhi) certification in 2011. this was the first level iii center in france to receive this designation and was recertified in 2015. the bfhi certification process was a great opportunity to make invaluable improvements to support families. it also became a crucial tool for cohesion and positive dynamics within the obstetric and neonatal teams. consequently, in 2012 the team envisioned starting the nnacp certification process, a path consistent with our philosophy. by means of several work groups and parental collaboration, the certification process involved the entire team and was supported by the hospital general management, care management and quality management. the process generated numerous reflections, leading to improvements regarding the parents’ role in the unit and the care provided to babies. our hospital’s visit from the nnacp site reviewers occurred in september 2016. their visit was one of intense interaction, which allowed for review of the program criteria and resulted in certification! as may be expected, the neonatology department continues working on improving the quality of care delivered to agree with the nidcap philosophy. beyond the certification being an outstanding event in our history, it is also seen as a noteworthy stepping stone. our hope is this second nnacp certification in france will be an important milestone towards the diffusion of nidcap within our northern region and, furthermore, throughout the country. the inclusion of nidcap and of the bfhi processes in the next regional health plan is a short term measure that could contribute towards this initiative. our path to nidcap nursery certification catherine zaoui-grattepanche, md1 1 service de neonatologie centre hospitalier de valenciennes, valenciennes, france celebration in valenciennes, france developmental observer • 2017 • 11 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery assessment and certification program (nnacp) the nidcap nursery assessment and certification program (nnacp) provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. external review and validation by the nfi may be sought when a nursery feels it has achieved this goal. successful nidcap nursery certification, the ultimate goal, denotes distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment. nurseries that have achieved this recognition serve as a model and an inspiration to others. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nnacp director at: nnacpdirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, april 29, 2017 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care and assessment in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach. adopted by the nfi board, april 29, 2017 12 • 2017 • developmental observer n i d c a p t r a i n i n g c e n t e r s a r o u n d t h e w o r l d fatima clemente, md, madalena ramos, rn msc, hercília guimarães, md phd the são joão nidcap training center, centro hospitalar de são joão, porto, portugal the first newborn intensive care units (nicus) appeared in portugal in the 1980’s. an eight-bed nicu was established in the são joão hospital on july 5, 1983. there has been a very positive evolution in healthcare activity from the time the nicu service opened until the present day. one of the most important accomplishments of our unit is the emphasis on the special attention given to families. since the beginning in 1983, parents have been encouraged to participate in the care of their newborns and to stay 24 hours with them, giving rise to empowered and informed families, and laying the foundation of developmental care in our unit. são joão hospital is a university medical center, general hospital providing a broad spectrum of pediatric subspecialties dedicated to the care of children and their families. it is located in northern portugal, in the city of porto, a beautiful river and seaside city. our unit is a 17 bed level iiic nicu that provides services to infants born in our hospital’s maternity unit as well as infants transported from other hospitals in northern portugal (25% of all admissions). this past year there were 417 admissions. the majority of infants are born near full-term age with complex genetic, surgical and cardiac health conditions. as a consequence, it is sometimes necessary to transfer preterm infants to other units due to a lack of beds. the driving motivation of our journey toward nidcap was to understand and support infants and families, recognizing that parents are the most important persons in their infant´s life and the infant’s primary caregivers. initially, madalena ramos applied and received a research grant from the calouste gulbenkian foundation, an important portuguese institution, to travel with a small group to boston in 2002 and work with heidelise als, phd, who developed the nidcap model. one of the most important and fundamental steps for nidcap implementation in our unit was the participation of our nicu director and professor of pediatrics at porto university, hercília guimarães, as well as the nicu nurse director, teresa maia. they, too, traveled to boston and participated in professor heidelise als’ introductory lecture and bedside training. this was a decisive milestone in our project. our hospital leadership understood what nidcap was and the importance of its implementation in our hospital. while in boston, our team met another person who would play an important role in our nidcap journey: nikk conneman, md. under his guidance and support, we continued the process that involved all of our nicu staff for the past 15 years. in 2008, nikk certified two nidcap professionals: fatima clemente, a physician, and carla castro, a nurse. our hospital was very proud to have the first portuguese nidcap professionals and we had the commitment of all the hospital managers. since 2008, four more staff have been certified, three nurses: madalena ramos, lígia silva, and florbela netoand, and a psychologist, sara almeida. we also have an enthusiastic team in training, including six nurses, cristina araujo, sandra ribeiro, branca oliveira, fatima ferreira, isabel vieira, and eugénia fernandes, an occupational therapist, lurdes ribeiro, and two neonatologists, gustavo rocha and susana pissarra. in 2007, fatima and carla attended their first nidcap trainers meeting hosted by the french team in combrit, brittany. it was a starting point for us. we definitely wanted to be part of that family. the unflagging support of the medical and nursing leadership allowed the developmental team to move forward and start dreaming about the possibility of opening the portuguese nidcap training center in porto. during this process, we had the privilege of having the support of an amazing person, graciela basso, md. she was our nidcap and apib master trainer and also our dear friend. fatima began training in the assessment of preterm infant behavior (apib) and achieved certification in 2014. she had the privilege of participating on an apib team with the trainers-in-training of madrid and barcelona. graciela guided us on a journey through many high points, yet also some challenges, culminating in the opening of the portuguese nidcap training center on april 1, 2015. the beautiful ceremony mobilized our entire hospital and families as well. fatima clemente, teresa maia, ana vilan, nikk conneman, hercilia guimarães, madalena ramos, carla castro, ligia silva, josep perapoch developmental observer • 2017 • 13 in addition to nidcap training in our own nicu, we began training with professionals in the cities of évora, in southern portugal and lisbon. a key focus is always the educational and consultative support towards effective delivery of care in a neurodevelopmentally supportive, individualized, and family-centered framework. we found very enthusiastic and dynamic professionals in these hospitals, including ana malveira, maria franco and carmo silva, who comprised our very special first team of trainees. we have also taken the training across the atlantic to brazil. in addition, we had a rewarding experience bringing a shift from protocol-based to strategic process thinking and from task-oriented to relationship-based care in a very different setting in angola, africa. in 2017, we decided to advance further. madalena ramos started her journey to become apib professional and nidcap trainer with graciela. this step will open future possibilities for our nidcap training center. we are very excited about what the future holds for our training center, in terms of both successes and challenges. são joão nidcap training center will host the 29th annual nidcap trainers meeting in october 2018. this will offer a timely opportunity to reflect on our center’s development over the years and future strategies to improve developmental outcomes for infants and families by providing developmental services in the nicu, follow-up clinic and pediatric service. an additional challenge is to plan and prepare to achieve nidcap nursery certification. in 2018, the construction of the new pediatric hospital will begin with a new unit for 27 newborns. this will provide a unique opportunity to plan and build a service according to our philosophy of developmental and family centered care with individual rooms for each baby and her or his family. this will be a dream come true, with the unconditional support of the director of the pediatric hospital, professor maria joão baptista, and the commitment of the clinic director of são joão hospital, professor artur paiva. all of our staff feels we have an opportunity and a duty to make a difference for infants and families in our nicu and beyond. the phrase of the nfi, “changing the future for infants in intensive care”, makes senses to all of us, and is our inspiration!front: graciela basso, sara almeida, florbela neto back: fatima clemente, madalena ramos and carla castro carla castro, eugénia fernandes, isabel vieira, madalena ramos, florbela neto, fatima clemente, graciela basso 14 • 2017 • developmental observer x x x x x x x by line developmental observer • 2016 • 14 d e v e l o p m e n ta l r e s o u r c e s joke wielenga, rn, phd publications allegaert k, van den anker jn. neonatal pain management: still in search of the holy grail. international journal of clinical pharmacology and therapeutics. 2016; 54(7):514-23. altimer l, phillips r. the neonatal integrative developmental care model: advanced clinical applications of the seven core measures for neuroprotective family centered developmental care. newborn & infant nursing reviews. 2016; 16(4):230-44. anand kj. revisiting a dilemma: repetitive pain vs. opioid exposures? acta paediatrica. 2016; 105(7):736-7. baarslag ma, allegaert k, van den anker jn, kribbe ca, van dijk m, simons sh, tibboel d. paracetamol and morphine for infant and neonatal pain; still a long way to go? expert review of clinical pharmacology. 2017; 10(1):111-26. barbieri-figueiredo mdc, ramos m, oliveira b, fernandes e, neto f. oc45 towards family-centred care in neonatal intensive care unit. nursing children & young people. 2016 may 9; 28(4):84-5. bembich s, marrazzo f, barini a, ravalico p, cont g, demarini s. the cortical response to a noxious procedure changes over time in preterm infants. pain. 2016; 157(9):1979-87. bembich s, fiani g, strajn t, sanesi c, demarini s, sanson g. longitudinal responses to weighing and bathing procedures in preterm infants. journal of perinatal & neonatal nursing. 2017; 31(1):67-74. benoit b, campbell-yeo m, johnston c, latimer m, caddell k, orr t. staff nurse utilization of kangaroo care as an intervention for procedural pain in preterm infants. advances in neonatal care. 2016; 16(3):229-38. boland ra, davis pg, dawson ja, doyle lw. what are we telling the parents of extremely preterm babies? australian and new zealand journal of obstetrics & gynaecology. 2016; 56(3):274-81. brandene l. reflective peer consultation as an intervention for staff support in the nicu. newborn & infant nursing reviews. 2016; 16(4):289-92. bröring t, oostrom kj, lafeber hn. jansma ep, oosterlaan j. sensory modulation in preterm children: theoretical perspective and systematic review. plos one. 2017; 2:e0170828. carbajal r, guedj r, rambaud j, leger pl. impact of a systematic neonatal pain and sedation protocol. acta paediatrica. 2016; 105(7):734-5. clifford p. language outcomes at 36 months in prematurely born children are associated with quality of developmental care in nicus. advances in neonatal care. 2016; 16(6):401-2. conde-agudelo a, díaz-rossello jl. kangaroo mother care to reduce morbidity and mortality in low birthweight infants. cochrane database of systematic reviews. 2016 aug 23;(8): cd002771. cook lm, nichols-dada j, damani s, lawrence v, layson s, mitchel d, muhammad s, samaniego-yamin l, talley jw, vannatta b, higgins m, cooley k. randomized clinical trial of 24% oral sucrose to decrease pain associated with peripheral intravenous catheter insertion in preterm and term newborns. advances in neonatal care. 2017; 17(1):e3-e11. courtois e, cimerman p, dubuche v, goiset mf, ortèvre c, lagarde a, sgaggero b, guiot c, goussot m, huraux e, nanquette mc, butel c, ferreira am, lacoste s, séjourne c, jolly v, lajoie g, maillard v, guedj r, chappuy h, carbajal r. the burden of venipuncture pain in neonatal intensive care units: epippain 2, a prospective observational study. international journal of nursing studies. 2016; 57:48-59. crowe l, chang a, wallace k. instruments for assessing readiness to commence suck feeds in preterm infants: effects on time to establish full oral feeding and duration of hospitalisation. cochrane database of systematic reviews. 2016 aug 23; (8):cd005586. dall’oglio i, portanova a, tiozzo e, gawronsk o, rocco g, latour jm. oc47 nicus and family-centred care, from the leadership to the design, the results of a survey in italy (by fcc italian nicu study group). nursing children & young people. 2016; 28(4):86. davidson je, aslakson ra, long ac, puntillo ka, kross ek, hart j et al. guidelines for family-centered care in the neonatal, pediatric, and adult icu. critical care medicine. 2017; 45(1):103-28. deindl p, giordano v, fuiko r, waldhoer t, unterasinger l, berger a, olischar m. the implementation of systematic pain and sedation management has no impact on outcome in extremely preterm infants. acta paediatrica. 2016; 105(7):798-805. dykes f, thomson g, gardner c, hall moran v. flacking r. perceptions of european medical staff on the facilitators and barriers to physical closeness between parents and infants in neonatal units. acta paediatrica. 2016; 105(9):1039-46. flint a, new k, davies mw. cup feeding versus other forms of supplemental enteral feeding for newborn infants unable to fully breastfeed. cochrane database of systematic reviews. 2016 aug 31; 8:cd005092. foster jp, psaila k, patterson t. non-nutritive sucking for increasing physiologic stability and nutrition in preterm infants. cochrane database of systematic reviews. 2016 oct 4; 10:cd001071. developmental observer • 2017 • 15 francis k. what is best practice for providing pain relief during retinopathy of prematurity eye examinations? advances in neonatal care. 2016; 16(3):220-8. gokulu g, bilgen h, ozdemir h, sarioz a, memisoglu a, gucuyener k, ozek e. comparative heel stick study showed that newborn infants who had undergone repeated painful procedures showed increased short-term pain responses. acta paediatrica. 2016; 105(11):e520-e525. grace t, oddy w, bulsara m, hands b. breastfeeding and motor development: a longitudinal cohort study. human movement science. 2017; 51:9-16. gregson s, meadows j, adams m, williams s, ruikan y. taking kangaroo care to china. midwives. 2016; 19:44-6. harris j, ramelet a-s, van dijk m, pokorna p, wielenga j, tume l, tibboel d, ista e. clinical recommendations for pain, sedation, withdrawal and delirium assessment in critically ill infants and children: an espnic position statement for healthcare professionals. intensive care medicine. 2016; 42(6):972-86. hartley c, duff ep, green g, mellado gs, worley a, rogers r, slater r. nociceptive brain activity as a measure of analgesic efficacy in infants. science translational medicine. 2017; 9(388):eaah6122. hasanpour m, alavi m, azizi f, als h, armanian am. iranian parent-staff communication and parental stress in the neonatal intensive care unit. journal of education and health production. 2017; 6:1-7 healy db, brennan am, o’donovan r, daly v, doolan a, dempsey em. structured promotion of breastmilk expression is associated with shortened hospitalisation for very preterm infants. acta paediatrica. 2016; 105(6):e252-6. jaafar sh, ho jj, jahanfar s, angolkar m. effect of restricted pacifier use in breastfeeding term infants for increasing duration of breastfeeding. cochrane database of systematic reviews. 2016 aug 30; (8):cd007202. jaafar sh, ho jj, lee ks. rooming-in for new mother and infant versus separate care for increasing the duration of breastfeeding. cochrane database of systematic reviews. 2016 aug 30; (8): cd006641. kair lr, colaizy tt. breastfeeding continuation among late preterm infants: barriers, facilitators, and any association with nicu admission? hospital pediatrics. 2016; 6(5):261-8. kim js, shin hs. development of the developmental support competency scale for nurses caring for preterm infants. [korean] journal of korean academy of nursing. 2016; 46(6):793-803. kommers d, oei g, chen w, feijs l, bambang oetomo s. suboptimal bonding impairs hormonal, epigenetic and neuronal development in preterm infants, but these impairments can be reversed. acta paediatrica. 2016; 105(7):738-51. koopman i, callaghan-koru ja, alaofin o, argani ch, farzin a. early skin-toskin contact for healthy full-term infants after vaginal and caesarean delivery: a qualitative study on clinician perspectives. journal of clinical nursing. 2016; 25(910):1367-76. lundeen s, sorensen s, bland m, george s, snyder b. nurses’ perspectives on the process of attaining baby-friendly designation. nursing for womens health. 2016; 20(3):277-87. maree c, downes f. trends in familycentered care in neonatal intensive care. journal of perinatal & neonatal nursing. 2016; 30(3):265-69. marfurt-russenberger k, axelin a, kesselring a. franck ls, cignacco e. the experiences of professionals regarding involvement of parents in neonatal pain management. journal of obstetric gynecologic & neonatal nursing. 2016; 45(5):671-83. meesters n, simons s, van rosmalen j, reiss i, van den anker j, van dijk m. waiting 2 minutes after sucrose administration-unnecessary? archives of disease in childhood: fetal and neonatal edition. 2017; 102(2):f167-9. mcginnis k, murray e, cherven b, mccracken c, travers c. effect of vibration on pain response to heel lance: a pilot randomized control trial. advances in neonatal care. 2016; 16(6):439-48. mcneil e, patterson n, manetto-spratt p, patsch a. incorporating infant mental health models into early intervention for infants and families discharged from the neonatal intensive care unit. newborn & infant nursing reviews. 2016; 16(4):303-8. milette i, martel mj, da silva r, mcneil mc. guidelines for the institutional implementation of developmental neuroprotective care in the neonatal intensive care unit. part a: background and rationale. a joint position statement from the cann, capwhn, nann, and coinn. canadian journal of nursing research. 2017; 49(2):46-62. milette i, martel mj, da silva r, mcneil mc. guidelines for the institutional implementation of developmental neuroprotective care in the nicu. part b: recommendations and justification. a joint position statement from the cann, capwhn, nann, and coinn. canadian journal of nursing research. 2017; 49(2):63-74. mitchell aj, hall rw, golianu b, yates c, williams dk, chang j, anand k. does noninvasive electrical stimulation of acupuncture points reduce heelstick pain in neonates? acta paediatrica. 2016; 105(12):1434-9. montirosso r, casini e, del prete a, zanini r, bellù r, borgatti r, neoacqua study group. neonatal developmental care in infant pain management and internalizing behaviours at 18 months in prematurely born children. european journal of pain. 2016; 20(6):1010-21. montirosso r, giusti l, del prete a, zanini r, bellù r, borgatti r. language outcomes at 36 months in prematurely born children is associated with the quality of developmental care in nicus. journal of perinatology. 2016; 36(9):768-74. 16 • 2017 • developmental observer montirosso r, giusti l, del prete a, zanini r, bellù r, borgatti r. does quality of developmental care in nicus affect health-related quality of life in 5-y-old children born preterm? pediatric research. 2016; 80(6):824-8. montirosso r, tronick e, borgatti r. promoting neuroprotective care in neonatal intensive care units and preterm infant development: insights from the neonatal adequate care for quality of life study. child development perspectives. 2017; 11(1):9-15. moody c, callahan tj, aldrich h, gancecleveland b, sables-baus s. early initiation of newborn individualized developmental care and assessment program (nidcap) reduces length of stay: a quality improvement project. journal of pediatric nursing. 2017; 32:59-63. moore er, bergman n, anderson gc, medley n. early skin-to-skin contact for mothers and their healthy newborn infants. cochrane database of systematic reviews. 2016 nov 25; 11:cd003519. mundim de oliveira i, corrêa castrai t, peres cavalcante mmf, catatayud carvalho j, firmino daré m, marques salge ak. nursing professionals’ knowledge and attitude related to assessment and treatment of neonatal pain. revista eletronica de enfermagem. 2016; 18:1-10. nelson am, bedford pj. mothering a preterm infant receiving nidcap care in a level iii newborn intensive care unit. journal of pediatric nursing. 2016; 31(4):e271-82. neshat h, jebreili m, seyyedrasouli a, ghojazade m, hosseini mb, hamishehkar h. effects of breast milk and vanilla odors on premature neonate’s heart rate and blood oxygen saturation during and after venipuncture. pediatrics & neonatology. 2016; 57(3):225-31. ohlsson a, shah ps. paracetamol (acetaminophen) for prevention or treatment of pain in newborns. cochrane database of systematic reviews. 2016 oct 7; 10:cd011219. oras p, thernström blomqvist y, hedberg nyqvist k, gradin m, rubertsson c, hellström-westas l, funkquist el. skin-to-skin contact is associated with earlier breastfeeding attainment in preterm infants. acta paediatrica. 2016; 105(7):783-9. perrone s, bellieni cv, negro s, longini m, santacroce a, tataranno ml, bazzini e, belvisi e, picardi a, proietti f, iantorno l, buonocore g. oxidative stress as a physiological pain response in full-term newborns. oxidative medicine & cellular longevity. 2017; article id 3759287, epub 2017 jan 4. pierrat v, coquelin a, cuttini m, khoshnood b, glorieux i, claris o, durox m, kaminski m, ancel p-y, arnaud c, and the epipage-2 neurodevelopmental care writing group. translating neurodevelopmental care policies into practice: the experience of neonatal icus in france-the epipage-2 cohort study. pediatric critical care medicine. 2016; 17(10):957-67. pölkki t, laukkala h, korhonen a. nurses’ and parents’ perceptions of parental guidance on using nonpharmacological pain-relieving methods among neonates in the nicu. pain management nursing. 2016; 17(4):272-80. porat-zyman g, taubman-ben-ari o, spielman v. dyadic transition to parenthood: a longitudinal assessment of personal growth among parents of pre and full-term infants. stress health. 2017; 33(1):24-34. purdy ib, melwak ma, smith jr, kenner c, chuffo-siewert r, ryan d, geller p, hall s. neonatal nurses nicu quality improvement: embracing ebp recommendations to provide parent psychosocial support. advances in neonatal care. 2017; 17(1):33-44. raffaeli g, cristofori g, befani b, de carli a, cavallaro g, fumagalli m, plevani l, mosca f. edin scale implemented by gestational age for pain assessment in preterms: a prospective study. biomed research international. 2017; epub 2017 feb 8. rafiey h, soleimani f, torkzahrani s, salavati m, nasiri m. scale development and psychometrics for parents’ satisfaction with developmental care in neonatal intensive care unit. iranian journal of child neurology. 2016; 10(4):16-24. roué j-m, kuhn p, lopez maestro m, maastrup ra, mitanchez d, westrup b, sizun j. eight principles for patientcentred and family-centred care for newborns in the neonatal intensive care unit. archives of disease in childhood fetal neonatal edition. 2017; 102:f364-368. scism ar, cobb rl. integrative review of factors and interventions that influence early father–infant bonding. journal of obstetric gynecologic & neonatal nursing. 2017; 46(2):163-70. shaker cs. infant-guided, co-regulated feeding in the neonatal intensive care unit. part ii: interventions to promote neuroprotection and safety. seminars in speech & language. 2017; 38(2):106-115. sharma a. efficacy of early skin-toskin contact on the rate of exclusive breastfeeding in term neonates: a randomized controlled trial. african health sciences. 2016; 16(3):790-797. smith er, bergelson i, constantian s, valsangkar b, chan gj. barriers and enablers of health system adoption of kangaroo mother care: a systematic review of caregiver perspectives. pediatrics. 2017; 17:1-16. soleimani f, torkzahrani s. rafiey h, salavati m, nasiri m. assessing factors influencing the quality of developmental care in neonatal intensive care units of tehran. iranian journal of pediatrics. 2017; 27(1):1-6. sood e, berends wm, butcher jl, lisanti a, medoff-cooper b, singer j, willen e, butler s. developmental care in north american pediatric cardiac intensive care units: survey of current practices. advances in neonatal care. 2016; 16(3):211-9. spatz dl, edwards tm. the use of human milk and breastfeeding in the neonatal intensive care unit: position statement 3065. advances in neonatal care. 2016; 16(4):254. developmental observer • 2017 • 17 spittle a, treyvaud k. the role of early developmental intervention to influence neurobehavioral outcomes of children born preterm. seminars in perinatology. 2016; 40:542-548. stevens b, yamada j, ohlsson a, haliburton s, shorkey a. sucrose for analgesia in newborn infants undergoing painful procedures. cochrane database of systematic reviews. 2016 jul 16; 7:cd001069. stockwell s. benefits of kangaroo care for premature babies continue into young adulthood. american journal of nursing. 2017; 117(3):15. tully kp, holditch-davis d, silva s, brandon d. the relationship between infant feeding outcomes and maternal emotional well-being among mothers of late preterm and term infants: a secondary, exploratory analysis. advances in neonatal care. 2017; 17(1):65-75. warren i, hicks b, kleberg a, eliahoo j, anand kj, hickson m. the validity and reliability of the evaluation of intervention scale: preliminary report. acta paediatrica. 2016; 105(6):618-22. westrup b. it is important with developmental supportive interventions beyond the nicu period. acta paediatrica. 2016; 105(7):732-3. whetten ch. cue-based feeding in the nicu. nursing for women’s health. 2016; 20(5):507-10. xu w, walsh s, cong xs. development of accumulated pain/stressor scale (apss) in nicus: a national survey. pain management nursing. 2016; 17(6):354-62. zhang x, lee s-y, chen j, liu h. factors influencing implementation of developmental care among nicu nurses in china. clinical nursing research. 2016; 25(3):238-53. zeiner v, storm h, doheny kk. preterm infants’ behaviors and skin conductance responses to nurse handling in the nicu. journal of maternal-fetal & neonatal medicine. 2016; 29(15):2530-5. conferences/meetings nidcap trainers meeting location: chateau lacombe, 10111 bellamy hill rd nw, edmonton, alberta canada date: october 21-24, 2017 information: www.nidcap.org shine, zero to three annual conference location: san diego, california, usa date: november 29 – december 1, 2017 information: www.zerotothree.org touch a life, impact a lifetime: neuroprotection in the nicu location: children’s healthcare of atlanta office park, atlanta, georgia, usa date: december 5, 2017 information: www.choa.org the 31st annual gravens conference on the physical and developmental environment of the high-risk infant location: clearwater beach, florida, usa date: february 28 -march 3, 2018 information: bobbi rose brose@health. usf.edu. video/movies about nidcap france: nidcap: à l’écoute des enfants prématurés https://www.youtube.com watch?v=2zxza3b9xt8 france: les bébés prématurés du programme nidcap de i’hôpital des enfants du chu de toulouse: https://www.youtube.com/watch?v=z957tqvo6w spain: premios hospital optimista proyecto nidcap https://www.youtube.com/ watch?v=507emgaxep8 the nfi thanks its first corporate sponsor, sonicu, as well as its second corporate sponsor, dr. brown’s. the generous support of these sponsors helps the nfi raise global awareness of the need for nidcap care and enhances opportunities to develop educational programs to broaden the reach of this care to more and more nicu professionals and the ‘preterm families’ they serve. sonicu is recognized as a leader in nicu monitoring technology. sonicu’s mission to measure and monitor is rooted in the passion to protect and the desire to create a safe, healing environment. for decades, parents have relied on dr. brown’s® products to make sure their babies receive the best nutrition from the start, including longtimefavorite natural flow bottles that help reduce feeding problems like colic, spit-up, burping and gas. now, the new dr. brown’s® medical product line extends the same dr. brown’s® healthy benefits to families with babies who have feeding issues, in addition to the medical professionals who play a critical role in infant development. our sponsors 18 • 2017 • developmental observer about world prematurity day celebrated internationally on november 17th, world prematurity day (wpd) acknowledges the journeys of preterm infants and their families as well as raises awareness of the challenges faced by children born preterm and their families. purple is the symbolic color of wpd representing sensitivity and individuality, two of the characteristics of the premature infant. please join us in honor of world prematurity day 2017 the nidcap federation international (nfi) invites you to pay tribute to newborns, and to their families, nursery staff and hospitals around the world who provide essential nidcap care. a popular way to spread the word is through the purple illumination of landmarks in your communities and the purple illumination of hospital websites. the national nidcap training center in boston, massachusetts has arranged for the lighting of the zakim bridge which is traversed by tens of thousands of people every day, and the nfi hopes that each training center will arrange for a similar marking of the day whether it be the lighting of a bridge, a government building, your hospital’s website, your nicu’s webpage, or your community’s local newspaper (print or electronic version). please consider contacting the programs in your communities that can execute such “illuminations”. other suggestions for celebrating the day: • send the nfi’s wpd information sheet to your local news agencies to inspire a story about preterm birth; • sponsor activities for the parents of preemies in your newborn intensive care units and/or your communities; • coordinate an educational workshop for your nicu staff on the sensitivities and individuality of preterm infants; • promote your activities using the nfi’s poster template found on the nfi’s wpd page. • share your wpd activities via your own social media and share on the nfi’s social media: we encourage you to mark world prematurity day in your own special way and to share these ideas with us so that we may help broaden nidcap’s global reach. nfi celebrates world prematurity day november 17, 2017 the 28th annual nidcap trainersmeeting october 21–24, 2017 chateau lacombe 10111 bellamy hill rd nw edmonton, alberta t5j 1n7 canada hosted by the nidcap training center in development at stollery children’s hospital, edmonton (by invitation only) annual nfi membership meeting sunday, october 22, 2017 8:00am – 10:00am chateau lacombe 10111 bellamy hill rd nw edmonton, alberta t5j 1n7 canada developmental observer • 2017 • 19 developmental observer the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org 2017 vol. 10 no. 2 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “cherish your human connections: your relationships with friends and family.” joseph brodsky our family’s journey: a story of love, hope, faith, and strength by marnie eveslage and patty haler, rn, rnc-nic1 1 staff nurse, mayo clinic, rochester, mnm y husband, jeff, and i are honored to share our story about love, hope, faith, and strength. these four concepts kept us going through some of the hardest and happiest days of our lives. we hope other parents and families find comfort and peace after reading our story. we feel this confirms that miracles do happen, and that even in the most difficult situations, strength and resiliency exist in all of us. our journey in the mayo clinic newborn intensive care unit (nicu) began after we welcomed our beautiful daughter, brinley grace eveslage, into the world on july 14, 2015 at 12:32 pm. she weighed 5 pounds 11 ounces at 33 weeks gestation. it was a groggy monday after a busy weekend with a baby shower my awesome sister planned for us. i was uncomfortable after developing lower back pain. i didn’t sleep much sunday night and waddled into work. i planned to go home early and treat myself to a massage. how on earth was i going to survive another seven weeks? my coworkers planned a surprise baby shower so i stuck out the day. what i did not realize was that i was in active labor. i left the clinic, where i work as a medical social worker, to change clothes and to feed the dog, only to return to triage that evening. i was convinced i was not in labor; i did not feel a single contraction but something just felt off. “surprise, you are dilated to seven. you are having a baby.” tears flowed down my face in fear as i knew it was too soon. i was given medication to try to stop delivery but i threw it up. contractions progressed quickly and brinley knew she needed to come out as, unknown to us at the time, her intestine twisted and ruptured before birth. we were blessed with a smooth vaginal delivery. brinley was swept quickly into another room where the neonatal team patiently waited. they, too, were surprised to see her with a blue and distended tummy. we expected a premature baby who would be healthy. our world changed as the neonatologist quickly explained she needed exploratory surgery and to be moved to the nicu. we were able to meet her but could not hold her right then. she was beautiful with big eyes and was exploring the sound of our voices. we held her hand and wept with overwhelming emotion. not continued on page 2 table of contentsour family’s journey ................................ 1 preemie project ......................................... 4 spontaneous motility of preterm and full term babies ........................................ 6 our path to nidcap nursery certification ............................................. 10 nidcap training centers from around the world ................................................. 12 developmental resources ..................... 14 udit, quas abo. nos andi debit optate etur, occusdandi si ati nidcap federation international board of directors and staff 2016–2017 president deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net vice president james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary rita cummings, ma vice president–operations san francisco zen center email: ritacummings511@btinternet.com jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center email: n.conneman@erasmusmc.nl mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk gretchen lawhon, phd, rn, cbc, faan nidcap master trainer email: premieg@gmail.com kaye spence children’s hospital at westmead westmead, sydney, australia email: kaye.spence@health.nsw.gov.au björn westrup, md, phd director, karolinska nidcap training & research center email: bjorn.westrup@karolinska.se rodd e. hedlund, med director nidcap nursery assessment and certification program nidcap trainer email: nnacpdirector@nidcap.org sandra kosta, ba financial operations and administration director email: sandra.kosta@childrens.harvard.edu 20 • 2017 • developmental observer nidcap on the web to learn more about the nfi and its programs please visit us at www.nidcap.org please visit the nfi’s youtube channel to watch videos about nidcap (in 13 languages) and the nnacp. www.youtube.com/user/nidcapfi the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. follow us on all of our social media platforms: like us on facebook follow us on twitter follow our posts on pinterest connect with colleagues on linkedin watch our videos on you tube read and participate on our nidcap blog www.nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center (inactive) university of oklahoma health sciences center oklahoma city, oklahoma, usa director: andrea willeitner, md west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: vandenbergka@yahoo.com carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy@uclh.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: rachel wilson, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: hanne.aagaard@skejby.rm.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt nidcap germany, nidcap training center tübingen, tübingen, germany universitätsklinik für kinderund jugendmedizin director: christian poets, md phd contact: natalie broghammer, rn email: natalie.broghammer@med.uni-tuebingen.de french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr australasian nidcap training centre westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, rn, mn contact: nadine griffiths email: schn-nidcapaustralia@health.nsw.gov.au edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: trina cruz email: nidcapedmonton@ahs.ca 2021 vol. 14 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “all things are bound together. all things connect.” chief seattle suquamish and duwamish first nation chief greetings from the editor welcome to our first issue for 2021. let us hope that this year will be kinder, and we may start to move forward and heal together. looking back on 2020 several themes have emerged from the impact of the pandemic. first, during the challenges of covid-19 restrictions the strength of families and staff are demonstrated through several abstracts from the 31st nidcap trainers meeting. the group from modena showed if staff feel offering kangaroo care is safe then parents become involved with less stress. the team from beirut revealed that despite restrictions of covid-19 kangaroo sessions can increase. the group from rimini nicely demonstrated that if staff are supported, they in turn support parents to be involved in their baby’s care. the second theme focussed on how we strive to improve what we do. the graven’s group presented the important standards for infant and family developmental care to guide our practice, and we heard about how the plan-do-study-act (pdsa) quality cycle can be used to change practice by inga warren and her team. lindsay gilmore, a mother, in her insightful article heartbreak and hope during the pandemic gives us an understanding of the stress families experience. we learn about the success of innovation through the little readers read-a-thon from therese gisondi. and julia giesen returns with another perceptive poem in poets corner. despite the challenges we have all encountered this past year, the uk nidcap centre demonstrates how covid-19 impacted on the work of their centre and how they adapted to ensure their goals were met. inga warren, senior nidcap trainer received a commander of the british empire (cbe) in recognition of her work with premature infants and training. we learn about the amazing work in serbia in giving nidcap and developmental care a focus. we can learn from these interesting articles and the innovative ways we all strive to improve the care and experiences of the babies and their families. kaye spence am senior editor – developmental observer adjunct associate professor/ clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university/australia table of contents editorial ...................................................... 1 abstracts .................................................... 2 little readers read-a-thon .................. 10 global perspectives ............................... 12 family voices .......................................... 14 nidcap training centers around the world ........................................................ 18 poet's corner .......................................... 20 nidcap on the web ................................ 22 issn: 2689-2650 (online) do 14:1 full issue doi: 10.14434/do.v14i1.31806 abstract edition kaye spence, am doi: 10.14434/do.v14i1.31807 nidcap care in the moment connecting through challenges 2 • 2021 • developmental observer early kangaroo mother care in preterm infants: is it safe? bedetti l1, bertoncelli n2, lugli l2, spaggiari e2, cuomo g2, cosimo ac2, di giuseppe m2, ierardi g2, lelli t2, muzzi v2, paglia m2, pezzuti l2, piccolo a2, sabbioni f2, torcetta f2, torelli p2, lucaccioni l2, ferrari f3, berardi a3 1 phd in clinical and experimental medicine, university of modena and reggio emilia – italy 2 department of mother's and child's health, neonatal intensive care unit, aou modena – italy 3 university of modena and reggio emilia italy aims kangaroo mother care (kmc) was first described in 1978 by dr. edgar rey sanabria as an alternative to the incubator in lowresource countries. over time this practice has been extended to high income countries because it is effective in improving infant growth and neurodevelopment, especially in preterm infants. however, kmc is frequently feared by health care professionals, particularly nurses who are in charge to support infants and parents during the procedure. the aim of this study is to demonstrate the safety of early kmc in preterm infants. methods a prospective observational monocentric study was performed. infants born between june 2018 and june 2020, with gestational age <33 weeks and birth weight <2000 grams were monitored while having kmc during the first three weeks of life. infants with necrotizing enterocolitis, sepsis, congenital malformations, receiving mechanical ventilation or with more than five apneic episodes in the hour prior to kmc were excluded. continuous oxygen saturation (sao2), heart rate (hr) and respiratory rate (rr) as well as body temperature were registered during kmc, and in the hour prior to kmc. the minimum duration of the kmc session was 90 minutes. information regarding post conceptional age, weight, respiratory support, presence of central venous catheter and onset of sepsis within 72 hours after the procedure was collected. two physicians, blinded to patient conditions and period of analysis (before or during kmc) evaluated desaturation episodes (sao2 <85%, >15 seconds), bradycardia (hr <100, >15 seconds), and apnea (pause in breathing > 20 seconds associated with desaturation or/and bradycardia). wilcoxon signed-rank test was used for statistical analysis. the study was approved by the local ethics committee. results we analyzed 83 episodes of kmc for a total of 38 infants. mean gestational age at birth was 29 weeks (range 23-33 weeks). mean post conceptional age, days of life and weight at kmc were 31 weeks (range 25-34 weeks), 10 days (range 1-20 days) and 1131 grams (631-2206) respectively. seventy-seven percent of patients were on respiratory support and 47% of patients had a central venous catheter (umbilical catheter or peripherally inserted central catheter) during kmc. total duration of desaturation, total duration of bradycardia, number of apnea episodes and body temperature were not statistically different during kmc episode and the hour prior to kmc. no adverse events related to catheters were reported. one session was followed by sepsis. conclusion kmc plays a key role in the care of the preterm infants, and deserves to be increasingly offered to infants and to their families. the results of this study should reassure health care professionals, highlighting the safety of the procedure in preterm infants and the possibility to perform kmc in an intensive care setting in the first weeks of life. references: 1. boundy eo, dastjerdi r, spiegelman d, fawzi ww, missmer sa, lieberman e, kajeepeta s, wall s, chan gj. kangaroo mother care and neonatal outcomes: a meta-analysis. pediatrics. 2016 jan;137(1). doi: https://doi.org/10.1542/peds.2015-2238 2. shattnawi kk, al-ali n, alnuaimi k. neonatal nurses' knowledge and beliefs about kangaroo mother care in neonatal intensive care units: a descriptive, cross-sectional study. nursing and health sciences. 2019 sep;21(3):352-358. doi: 10.1111/nhs.12605 3. park hk, choi bs, lee sj, son ia, seol ij, lee hj. practical application of kangaroo mother care in preterm infants: clinical characteristics and safety of kangaroo mother care journal of perinatal medicine. 2014 mar;42(2):239-45. doi: 10.1515/jpm-2013-0066 4. kommers dr, joshi r, van pul c, atallah l, feijs l, oei g, bambang oetomo s, andriessen p. features of heart rate variability capture regulatory changes during kangaroo care in preterm infants. journal of pediatrics. 2017 mar;182:92-98. doi: 10.1016/jjpeds.2016.11.059 5. carbasse a, kracher s, hausser m, langlet c, escande b, donato l, astruc d, kuhn p. safety and effectiveness of skin-to-skin contact in the nicu to support neurodevelopment in vulnerable preterm infants. journal of perinatal and neonatal nursing. 2013 jul-sep;27 (3):255-62. doi: 10.1097/jpn.0b013e31829dc349 a semi-annual publication of the nidcap federation international ©2021. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria lopez maestro, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer doi: 10.14434/do.v14i1.31808 developmental observer • 2021 • 3 background the emphasis of newborn intensive care focuses on the physical care of the baby. the benefit of developmental care remains secondary, and the parents are often not integrated in the planning, education, decision-making, clinical implementation, and evaluation of their baby’s care. however, developmental family centered care is evolving as an essential component of practice for newborns and their families who experience intensive care. developmental practice currently lacks evidence based standardization and prioritization in order to affect collaborative practice standardization and ultimate outcomes. consequently, education, communication and policies are inconsistent, and the transition of families to home is wrought with discontinuity. objective a large body of research supportive of family centered developmental care practices and the resulting positive outcomes for infants and families has emerged. examination of existing research and practices resulting in interprofessional standards, competencies and best practices is warranted. study design an interprofessional committee of experts and parents utilized a systematic review process to evaluate the quality and strength of credible evidence. the concept of infant and family centered developmental care was described, practice components were identified, and evidence based standards and competencies were articulated using a process of consensus approval. results the recommended best practices and competencies for infant and family centered developmental care (ifcdc) are the result of the consensus process, and are published (https://nicudesign. nd.edu/nicu-care-standards/). the components of ifcdc include: systems thinking, positioning and touch, sleep and arousal, skin-to-skin contact, reduction of pain and stress for infants and families, and feeding. implications for nidcap the ifcdc document will assist in the provision of evidence for the on-going practices in newborn contexts within the nidcap model. an implementation strategy is required to enable competencies and best practices to be evaluated within each nidcap training center. conclusion the successful utilization of ifcdc evidence based standards can integrate the family with the interprofessional team, standardize practice, improve outcome and complement nidcap implementation. references: 1. browne jv and the consensus committee on infant family centered developmental care. executive summary: standards, competencies and best practices for infant and family centered care in the intensive care unit. journal perinatol, 2020 sep;40(suppl 1):5-10. doi: 10.1038/s41372-020-0767-1. 2. consensus committee on infant family centered developmental care. report of the first consensus conference on standards, competencies and best practices for infant and family centered care in the intensive care unit. february 2020. https://nicudesign.nd.edu/nicu-carestandards/ 3. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. march 4-7, 2020. 4. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. march 6-9, 2019. 5. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. february 28 march 3, 2018. 6. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. march 1-4, 2017. recommended standards, competencies and best practices for infant and family centered developmental care in the intensive care unit browne j, jaeger c, spence k, tyebkhan j, and the gravens consensus panel doi: 10.14434/do.v14i1.31809 letter to the editor i can't thank you enough for giving me and cyprus a place in the developmental observer. this article empowers all of us on the island who are working constantly to implement family centre care. i also need to congratulate you as this issue has so much interesting and useful information on so many levels. it is definitely worth reading! pani pantelides pt nidcap professional consultant neonatal physiotherapist and early intervention specialist nicosia, cyprus 4 • 2021 • developmental observer kangaroo care practice during covid-19 pandemic in a newborn intensive care unit of a middle-income country charafeddine l1, masri s1, maalouf f1, abi farraj f2, haidar m3, hamoud s3, chemali z3 1 department of pediatrics and adolescent medicine, american university of beirut medical center, beirut, lebanon 2 medical student at the faculty of medicine, american university of beirut medical center, beirut, lebanon 3 nursing services, american university of beirut medical center, beirut, lebanon aims kangaroo mother care (kmc), the practice of skin to skin contact provided to preterm infants in addition to breastfeeding, supports parents and leads to earlier discharge from the hospital.1 kmc is recommended for all clinically stable infants in the newborn intensive care unit (nicu) having been shown to improve infants’ physiological stability, weight gain, mother-infant bonding, exclusive breastfeeding rates and newborn survival).2-5 in many nicus, the covid-19 pandemic has potentially jeopardized the practice of kmc where restricted visitation policies were adopted. nevertheless, the american academy of pediatrics and world health organization (who) continue to recommend kmc and breastfeeding during this pandemic while taking appropriate precautions.6,7 the aim of the present study is to report the consequences of covid-19 related visitation restrictions on the practice of kmc for infants ≤34 weeks during implementation of a quality improvement (qi) project promoting kmc in a nicu of a middle-income country. methods the qi, followed the plan-do-study-act (pdsa) methodology, and was initiated in october 2018 in a level iv nicu. the multidisciplinary qi team consisting of four nicu nurses, a neonatologist and a developmental care coordinator led the kmc implementation project. to increase awareness of kmc benefits among staff and parents, the team used an arabic translation of the march of dimes “close to me” education materials.8 the team held parent and staff education sessions, supported nicu nurses and parents in the practice of kmc, and posted kmc related tips in each nicu room. documentation on kmc was noted to be deficient, which was targeted in one of the interventions. the kmc practice was observed from january 2020 to august 2020. covid-19 related participation restrictions were observed from april to august according to the hospital directions. the restrictions varied over time starting in march. at times, restrictions included prohibiting skin to skin and direct breastfeeding. during visits, each kmc session was considered as one occurrence per infant. restrictions, variations and interventions over time are listed in the control chart. (fig.1). doi: 10.14434/do.v14i1.31810 sum of kangaroo care sessions for all infants per week figure 1. control chart developmental observer • 2021 • 5 results the mean number of kmc sessions for infants ≤ 34 weeks was 2.5 sessions per month prior to visitation restrictions. after staff education, parent support sessions and later staff documentation, and after removing the restriction (june–july) the average sum of kmc increased to eight sessions per month. conclusion despite the participation restrictions, the kmc rate increased with time mainly due to parents’ determination to visit their infants and spend this time more efficiently. the interventions performed by the kmc qi team seemed to improve the rates of kmc at our institution especially during the adverse times relating to the covid-19 pandemic. lessons learned many inevitable measures affected this qi process namely the variation in the restriction measures and scarcity of nurses’ documentation. these are two main challenges that need to be addressed in the next pdsa cycle. references 1. world health organization, dept. of reproductive health and research. kangaroo mother care: a practical guide. isbn: 9241590351, who reference number: ws 410 2003ka. https://www.who.int/maternal_child_adolescent/documents/9241590351/en/ 2. campbell-yeo m, disher t, benoit b, johnston c. understanding kangaroo care and its benefits to preterm infants. pediatric health med ther. 2015;6:15-32. doi: 10.2147/phmt. s51869 3. mazumder s, taneja s, dube b, bhatia k, ghosh r, shekhar m, et al. effect of communityinitiated kangaroo mother care on survival of infants with low birthweight: a randomised controlled trial. lancet. 2019; 394(10210):1724-1736. doi: 10.1016/s01406736(19)32223-8 4. manazir ali s, sharma j, sharma r, alam s. kangaroo mother care as compared to conventional care for low birth weight babies. dicle medical journal/dicle tip dergisi. 2009; 36(3):155-160. 5. conde-agudelo, a., j.m. belizán, and j. diaz-rossello, cochrane review: kangaroo mother care to reduce morbidity and mortality in low birthweight infants. evidence-based child health: a cochrane review journal, 2012. 7(2): p. 760-876. https://doi.org/10.1002/ebch.1837 6. faqs: management of infants born to mothers with suspected or confirmed covid-19 [internet]. services.aap.org. 2020 [cited 15 july 2020]. available from: https://services.aap. org/en/pages/2019-novel-coronavirus-covid-19-infections/clinicalguidance/faqs-management-ofinfants-born-to-covid-19-mothers 7. q&a: breastfeeding and covid-19 [internet]. who.int. 2020 [cited 15 july 2020]. available from: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/question-and answers-hub/q-a-detail/q-a-on-covid-19-and-breastfeeding 8. cooper, l., et al., close to me: enhancing kangaroo care practice for nicu staff and parents. advances in neonatal care. 2014. 14(6): p. 410-423. doi: 10.1097/ anc.0000000000000144 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 6 • 2021 • developmental observer aims understanding sleep states is critical in the interpretation of infant observations. conversations with nidcap and apib professionals and trainers revealed that sleep state recognition can continue to be challenging post-training. sleep is essential for healthy neurodevelopment and recent research on fetal and preterm sleep has expanded our understanding of sleep states, including the category of indeterminate sleep (inds).1 the aim of this survey of nfi members was to explore areas of consistency and discrepancy in the clinical recognition of sleep states. methods an online, anonymous survey was emailed to the nidcap federation international (nfi) membership. the survey asked respondents to identify clinical features of quiet sleep (qs), active sleep (as) and indeterminate sleep (inds). respondents were asked to rank clinical signs in terms of the importance of each as a defining feature of that sleep state (i.e. is this clinical sign “never / occasionally / usually / always” seen, during this sleep state). respondents were invited to add comments and to suggest references. responses were automatically collated by survey software (google forms). the response categories never and occasionally were combined manually, as were the categories usually and always. given the questions asked and number of responses received, formal statistical analyses were not conducted. results/findings 39 responses were received, (17 from nidcap trainers and 17 from nidcap professionals). please see table 1 for details. qs was recognized by almost all as “regular breathing; no / occasional eye opening / closing, eye movements or body movements”. six respondents added “lower heart rate with minimal variability”. as was recognized by most as “irregular breathing; eye movements usually/always present, eye opening/closing occasionally present”. nine respondents added “facial movements and sucking”. there was less consistency of response for body movements and startles/twitches. inds: 19/38, (including 5/17 nidcap trainers) stated that they distinguish inds, from qs and as. inds was recognized by most as “irregular breathing”. however, there was no consistency for eyes opening/closing, eye movements, body movements or startles/twitches. comments suggest that there is discrepancy about recognition of inds. 19/38, (including 12/17 trainers) stated that they do not distinguish inds, from qs and as. reasons included: not an option on nidcap observation sheet (12); not part of my training (7); not familiar with inds. in response to “at what gestational age (ga) does qs time equal as time?”, the median ga was 40w, range 32w to 1 year of age (n=28). comments suggested that this ga may be dependent on ga at birth, and/or the caregiving environment. many other text responses highlighted points for deliberation, which we hope to present and discuss at the annual nidcap trainers meeting 2020. the most frequently recommended introductory reference was graven and browne 20082 (8/23 responses). there was no consensus for more detailed, in-depth references.1,3 limitations the response rate was 39 of 242 (16%) nfi members, and 17/45 trainers (38%), limiting generalizability of results. this survey was not pre-piloted, and some respondents made us aware of ambiguities of wording, that might have led to differing interpretations of questions. understanding sleep states dyck n1,2,3, warren i4, tyebkhan j 1,2,3 1 stollery children’s hospital, edmonton alberta, canada 2 university of alberta, edmonton, alberta, canada 3 edmonton nidcap training centre canada (entcc), edmonton, alberta, canada 4 university college london hospital, london, uk doi: 10.14434/do.v14i1.31811 table 1. results quiet sleep (n = 38) never/occasionally usually/always regular breathing 3 35 irregular breathing 34 2 eye movements 34 3 eyes opening/closing 36 0 body movements 35 1 startles/ twitches / tremors 32 6 active sleep (n = 38) never/occasionally usually/always regular breathing 32 4 irregular breathing 6 32 eye movements 3 34 eyes opening/closing 26 12 body movements 14 24 startles/ twitches / tremors 20 18 indeterminate sleep (n = 20) never/occasionally usually/always regular breathing 18 1 irregular breathing 5 15 eye movements 12 8 eyes opening/closing 12 8 body movements 11 9 startles/ twitches / tremors 12 8 developmental observer • 2021 • 7 conclusion 1. nidcap trainers and professionals are consistent in their clinical recognition of qs and as. 2. indeterminate sleep (inds) is not distinguished from qs and as by many, possibly because they were not taught about inds, and /or inds is not an option on the nidcap observation sheet. considering the role that sleep plays in neurodevelopment we suggest that inds be incorporated into training materials and into nidcap observation. 3. there is little agreement about the age at which total qs equals total as. since this may be related to the infant’s experience and has significance for neurodevelopment, this topic deserves further research. references: 1. dereymaeker a, pillay k., et al. review of sleep-eeg in preterm and term neonates, early human development. 2017, 113:87-103. doi:10.1016/j.earlhumdev.2017.07.003 2. graven sn, browne j. sleep and brain development: the critical role of sleep in fetal and early neonatal brain development. newborn and infant nursing reviews. 2008, 8(4):173– 179. doi:10.1053/j.nainr.2008.10.008 3. bennet l, walker dw, horne rsc. waking up too early – the consequences of preterm birth on sleep development. journal of physiology. 2018, 596(23):5687-5708. doi: 10.1113/ jp274950 31st annual nidcap trainers meeting held virtually 21st – 23rd october 2020 a few comments from the evaluation: 168 delegates attended from every nidcap training center the virtual format was successful and very much appreciated time zones were challenging pearls of wisdom, personal story telling, abstracts and journal club continue to be very popular nfi membership meeting was good and informative shorter days seemed as productive as full days moderators were excellent the prerecorded sessions worked well abstract session topics were interesting, showed some international differences explore opportunities to translate some presentations in advance 8 • 2021 • developmental observer background during the covid-19 pandemic many hospitals in italy restricted parental access to newborn intensive care units (nicu). in the best of cases parents have been allowed to stay with their babies only one parent at a time, wearing face masks. fathers were mostly hampered by the restrictive visiting polices, although their role in providing emotional support to mothers is well recognized. in addition, a good relationship between fathers and newborns will improve children's ability to regulate their emotions and impulses. aims/purpose to report challenges and opportunities in performing family centered care in a level iii italian nicu during the covid-19 pandemic outbreak. methods during the lockdown period the level iii nicu in rimini remained open for parents 24 hours a day. as opposed to the pre-covid-19 period, only one parent could take care of their baby at a time and were asked to wear a face mask. this new policy became necessary because of legislative and logistic reasons (eg., very small spaces in the unit). to cope with the new situation we put in place several strategies: empowering parents; regular multidisciplinary meetings with both parents; staff support by means of weekly staff briefings and the administration of a symptom checklist to the healthcare team before and after a mindfulness intervention performed prior to the covid-19 pandemic, and re-administered during the pandemic outbreak; early hospital discharge including home visits. non-structured interviews of fathers were also performed by a nidcap professional to explore father’s feelings. results during a two-months period (march-april 2020) eight vlbw infants (birthweight 943±341 grams, gestational age 26±2 weeks) were admitted to the nicu. parents origin was heterogeneous: two from italy, one from albania, one from france, one from senegal, one from china, and two from brazil. all mothers practiced skin-to-skin contact (ssc) with their babies, initiated at 9±6 days; 6/8 fathers initiated the ssc at 13±6 days. moreover, all fathers and mothers performed daily care for their babies (eg., tube feeding, nappy change). fathers’ interviews unveiled a loving engagement with their babies (“at the beginning i was loath to touch my baby, but now i enjoy physical contact with him. i am also able to manage the nasal prongs. now, i’d like to stay always in ssc, because it gives me a sense of safety and helps me to prepare to go home with him”; “taking care of him helps me to be in tune with nurses”; “i’m happy to stay in ssc with my daughter, if i could i’ll do it continuously. i love to give her a delicate massage behind the ear”). the symptom checklist administered to the healthcare team showed that the interventions was efficacious in reducing the anxiety score which remained stable during the covid-19 period. conclusion during the covid-19 pandemic, missing facial expressions because of facial masks, made it difficult to modulate verbal communication with parents and to interpret parents' reaction to communication; moreover, at the bedside, parents were alone in communicating with the staff, without the support of their partner, feeling the emotional burden of reporting updates about the baby to the whole family. this led to a higher degree of uncertainty, fragility, and lack of confidence among parents. despite this, both parents became involved in their baby’s care and staff did not show increased levels of stress during this period. coping strategies implemented in the unit could have contributed to these results. moreover, during the covid-19 period, fathers, without the mother’s presence, took up the challenge of taking care of their babies as primary caregivers. in conclusion, staff/parent partnerships, in challenging situations, can produce surprising opportunities for families. references: 1. lavizzari a, klingenberg c, profit j, zupancic jaf, davis as, mosca f, molloy ej, roehr cc, and the international neonatal covid-19 consortium. international comparison of guidelines for managing neonates at the early phase of the sars-cov-2 pandemic. pediatric research, published: 15 june 2020. doi: 10.1038/s41390-020-0976-5 2. o'brien k, robson k, bracht m, cruz m, lui k, alvaro r, da silva o, monterrosa l, narvey m, ng e, soraisham a, ye x y, mirea l, tarnow-mordi w, lee s, and the ficare study group and ficare parent advisory board. effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. lancet child adolescent health. 2018 apr;2(4):245-254. doi: 10.1016/s2352-4642(18)30039-7. 3. fishera d, khashue,f m, , adamab ea, feeleyc n , garfieldd cf , irelande jf, kolioulig f, lindbergh b, nørgaardi b, provenzi l, thomson-salok f, van teijlingen e. fathers in neonatal units: improving infant health by supporting the babyfather bond and mother-father coparenting. journal of neonatal nursing, 24 (6), 306-312. doi: 10.1016/j.jnn.2018.08.007 becoming parents in nicu during the covid-19 pandemic: challenges and opportunities ancora g, simeone n. neonatal intensive care unit, ausl romagna, infermi hospital,rimini, italy doi: 10.14434/do.v14i1.31812 save the dates the 32nd annual nidcap trainers meeting virtual meeting october 20–22, 2021 check the nfi website for further details. www.nidcap.org developmental observer • 2021 • 9 background innovations, step three in the fine training pathway1 for infant and family centred developmental care, explores systems organisation, and includes a quality improvement project to give students experience of change management processes. this project took place in a level iii nicu in a large urban centre with supervision from senior fine faculty with change management experience. aim hospitalised preterm and sick infants are exposed to many painful and stressful events. repeated pain and stress may have long-term consequences for neurodevelopment2 and in many situations nonpharmacological interventions are the first line of protection.3 this project aimed to improve the use of non-pharmacological pain and stress management strategies by 50% over a period of 6 months (july – december 2019) using the evaluation of intervention (evin)4 scale to train staff and evaluate practice. methods the project was carried out in an eight bed high dependency unit with three to four nurses attending per shift. the project lead (who had completed fine 2) trained a core team of fine 1 educated staff to score the evin at the bedside. the evin measures the quality of non-pharmacological pain management during caregiving or medical procedures. inter-rater reliability was checked. the selected intervention was heel lancing which was the most used method of blood sampling in both term and preterm newborn infants. the project applied the plan-do-study-act (pdsa)5 cycle to bring about the desired improvement in the use of nonpharmacological interventions. several plans for the project were modified after consultation with the fine supervisors. pdsa1 (april 2019): baseline data was collected using evin scores for 20 heel prick or lancing episodes performed by nurses or doctors. over two weeks the project lead and core team trained staff to use the evin with observation and scoring at the bedside or during simulations. pdsa 2 (july 2019): four weeks post training evin scores were again collected by core members working in pairs. following this a second pdsa cycle was initiated with more training, engagement of parents, feedback, and campaigning. pdsa 3: (december 2019): further data was collected, evaluated, and disseminated. the hospital quality improvement team advised that the project be expanded to involve the whole of the neonatal unit (46 beds: 16 newborn intensive care unit, 8 high dependency unit, 22 special care baby unit). training sessions have now captured most of the nurses in unit. the evin will be incorporated into the unit pain management guideline entrusted to the project lead. results an evin score of >85% indicates best practice and < 70% indicates poor practice. average evin scores improved from 65% (poor) at baseline, to 71% (intermediate) at the midpoint and 87% (best practice) at the pdsa3 evaluation. the percentage of improvement in best practice scores increased from 0% at baseline to 59% at pdsa.3 areas that showed the most improvement were rest before procedures, pacing of the procedure and facilitation of self-regulation. areas identified for further improvement were provision of a sweet oral solution for painful procedures, support from a second person and facilitation of sucking. conclusion a pilot quality improvement innovation project performed in the framework of fine 3 training, improved standards of nonpharmacological pain management and was adopted as a model for achieving wider changes across all levels of care in a busy level iii neonatal unit. the evin proved to be a practical tool for training and evaluation of practice. relevance to nidcap fine 3 is part of an educational pathway that is endorsed by the nfi as foundations in nidcap education. the experience offered in fine 3 shows promise as a way to nurture change management skills that could be applied either before, or even after, nidcap training. references: 1. warren i, mat-ali e, green m, nyathi d. evaluation of the family and infant neurodevelopmental education (fine) programme in the uk. journal of neonatal nursing 2019,25(2):93-98. doi:10.1016/j.jnn.2018.11.004 2. brummelte s, grunau re, et al. procedural pain and brain development in premature newborns. annals of neurology 2012,71(3):385-96. doi: 10.1002/ana.22267 3. pillai riddell r, racine n, et al. non-pharmacological management of infant and young child procedural pain. the cochrane database of systematic reviews 2011, issue 10. art. no.: cd006275. doi: 10.1002/14651858.cd006275.pub2 4. warren i, hicks b, kleberg a, eliahoo j, anand kjs, hickson m. the validity and reliability of the evaluation of intervention scale: preliminary report. acta paediatrica 2016,105(6):618-22. doi: 10.1111/apa.13370 5. donnelly p, kirk p. use the pdsa model for effective change management. education for primary care 2015,26(4): 279-81. doi: 10.1080/14739879.2015.11494356 a quality improvement project for non-pharmacological pain and stress management akyempon an1, hicks b2, warren i3 1 department of neonatology, homerton university hospital, london 2 isle of wight nhs trust 3 department of neonatology, university college london hospital, london doi: 10.14434/do.v14i1.31813 10 • 2021 • developmental observer little readers read-a-thon winner 2020 theresa gisondi bsn, rn, assistant nurse manager, special care nursery the andrew tesauro’s special care nursery (scn) at abington-jefferson health in pennsylvania, usa was thrilled to participate in the little readers read-a-thon in september of 2020. our clinical nurse scientist, dr. gretchen lawhon, brought this event to our attention and we recruited nursing volunteers to plan the event. our first step in planning the read-a-thon was to involve the community by requesting book donations. we posted our advertisement for book donations throughout the hospital as well as on the newborn special care associates facebook page. during the read-a-thon, we received approximately 400 books that were used for read-a-thon “starter packs” that included five books, education on the importance of reading to infants, a handmade bookmark, and hand sanitizer to stress the importance of hand hygiene. in addition to the read-a-thon starter packs, we gave out books throughout the event and used some for prizes at the end. we continue to receive donations which allows us to have a robust library from which we continue to give books to our parents and promote reading to babies in the scn. to keep the momentum going during the read-a-thon, we created a goal of 5,000 minutes of reading and updated our the scn staff putting together the read-a-thon starter packs in 2020, staff working in special care nurseries (scn) and newborn intensive care nurseries (nicus) worldwide were invited to participate in the little readers read-a-thon. reading to babies every day supports development not only in the nicu, but also going into early infancy and childhood. babies enjoy hearing their parent’s voice over any other sound, and perhaps what’s more important is that it is an activity that parents can do every day for their baby during a time when many feel helpless in an intense and often stressful environment. reading is also linked to improved language and writing abilities at school age, so it’s never too early to start. we encourage you to join our little readers read-a-thon. the little readers read-a-thon is endorsed by the nidcap federation international. little readers read-a-thon: an initiative of the australasian nidcap training centre and life’s little treasurers foundation dates for 2021 are 6-17 september. check website for details https://lifeslittletreasures.org.au developmental observer • 2021 • 11 the scn staff celebrating the win in front of the new library. from left to right: megan marcinek, shannon macort, casey carr, theresa gisondi, lauren katcher, jeannine hoffman. family participating in read-a-thon. (used with permission) read-a-thon “minute tracker” every day. the minute tracker, which stood at the entrance of the scn, was a handmade meter that tracked the number of minutes spent reading. it provided a visual reminder to the parents of our goal and how many minutes were still needed. we ended the read-a-thon with 5,344 minutes and surpassed our goal. the passion and time the staff put into this event made it successful. they came in on their own time and put together the starter packs, designed the advertisements, and took time themselves to read to all the babies. the nurses described the read-a-thon as empowering for our parents, as they felt they were making a positive impact on their child. it was heartwarming to walk through the unit and see parents interacting and reading together to their infant. one of the families who participated in the read-a-thon told us weeks later that they continue to read to their infant every night because of the read-a-thon. winning the read-a-thon was very exciting because we knew we did the best we could for our families. we did not know what to expect going into the event, but now seeing all the good that has come from it, we will continue this annual tradition. we are honored to be able to participate with hospitals around the world and promote this simple, yet impactful intervention in the scn. the winner’s certificate 12 • 2021 • developmental observer serbia, officially the republic of serbia, is a landlocked country situated at the crossroads of central and southeast europe in the southern pannonian plain and the central balkans. serbia has a population of seven million people, with 65,000 newborn deliveries per year. the incidence of preterm births is about 7%. belgrade, the capital city with two million inhabitants, has five maternity hospitals. the institute of neonatology in belgrade, is the largest neonatal unit in serbia. the neonatal hospital has 160 beds, 313 employees, 42 medical doctors (30 neonatologists), and 209 neonatal nurses. there are five neonatal wards, one being the newborn intensive care unit (nicu) classified as a level iiib with 22 beds. the institute has approximately 900-950 admissions per year, (preterm and high-risk newborns), from 52 delivery facilities located all over the country. more than 60% of the babies require intensive care. in an attempt to improve the outcome of newborns, as well as increasing our professional expertise, our institute team chose to learn more about developmental care. in 2007, we started communication with the uk nidcap training centre in london. in 2008, inga warren, a nidcap trainer, visited our institute, conducted a study day, and consulted with our team members. as a result of our meetings, we set short-, medium and long-term goals. by 2010, the majority of the tasks were completed, predominantly the shortand medium-term goals. we worked to turn the hospital into a more home-like environment for the babies. we introduced colorful bedding, improved positioning, started to encourage talking to the babies, and started using more shades and incubator covers. in addition, we started paying more attention to the environmental noise, we bought some snoedel dolls, and made some shelves for the equipment. two separate rooms for kangaroo mother care were opened. the rooms for kangaroo mother care (kmc) were created as a place for skin-to-skin holding as well as a place where families could have privacy in a homey atmosphere. parents’ reactions to this were fantastic. their satisfaction was visible – they described that they felt they were being treated as a family with understanding, attention, and respect, and they responded to the health care professionals in the same way. the parents started offering donations and asking how they can help the hospital. very soon, the two rooms were not enough because they were occupied all the time! actually, kmc was a turning point for the nursery. they contributed very much to parents’ encouragement and satisfaction. this had an impact on the parent – doctor relationship and contributed a lot to appreciation of the program among colleagues. we set up a nidcap team with six members, including: a neonatologist, a psychologist, a physiotherapist, nicu nurses and a respiratory therapist. in december 2010, two nurses became nidcap trainees under the uk nidcap training centre. the institute of neonatology started the partnership with parents for better outcome project, which includes nidcap, kmc and introduced an open-door policy with daily 12 hour access for parents and families. all of these initiatives were approved by the institute’s advisory and management board. nidcap team members gave lectures, held presentations on nidcap and kmc in seminars and meetings for neonatologists and neonatal nurses. several articles were published in the magazine for young parents a parent and a child. team members were invited to speak about this new newborn care method on several television shows on different channels. one of the shows even sparked the creation of the battle for the babies campaign, which aimed to raise funds for one hundred incubators for the babies in serbia. the result was not one hundred, but rather the donation of more than two hundred incubators. early on the equipment for developmental care was not available in serbia, such as reclining chairs for skin-to-skin contact, incubator covers, sound ears, nests and rolls for positioning, small pacifiers, small diapers and even small clothes for preterm and tiny babies. a lot of effort has been made to make it available, and today it is in use. the opportunity of meeting the european foundation for the care of newborn infants’ (efcni) executive board chairwoman, silke mader, further helped raise awareness for the needs of preterm babies across the country. very soon the serbian preterm infants’ parents association little giant was established. this organization became a member of the efcni and started a close cooperation. celebration of the world prematurity day was initiated, first in belgrade, and now all across serbia. it has been a special privilege for us, and our work was to be included, as a topic expert group members, in the work on standards of care for newborn health, issued by the efcni. the institute of neonatology has two nidcap professionals, and, considering the duration and complexity of nidcap training and education, together with the size of the hospital global perspectives of developmental care serbia milica rankovic janevski, md, phd institute of neonatology, belgrade, serbia doi: 10.14434/do.v14i1.31817 developmental observer • 2021 • 13 and its number of staff and babies, we considered trying a less demanding form of education, named practical skills. six nurses successfully completed the practical skills education, and we organized workshops for all the wards, to spread the basic knowledge and enable easy and successful implementation of developmental care. later practical skills evolved into the family and infant neurodevelopmental education (fine) programme. it seems that we were among the pioneers. our institute has been involved in a number of additional related efforts: in collaboration with the international association for infant massage (iaim), ten nurses completed the education, so that our institute could offer education in baby massage to the parents, prior to or soon after discharge, in an effort to support emerging relationships and close contact between the babies and their parents; two medical doctors were educated for bayley scales of infant and toddler development, (bayley-iii) for further follow up of the hospitalized babies; another equal achievement is that we actively participated in the project of the european milk bank association (emba) on recommendations for the establishment and operation of human milk banks in europe: a consensus statement from emba. breastfeeding and milk banks are closely connected to the developmental care; and unicef in serbia showed interest in our work, and the institute. in cooperation with unicef, workshops in developmental care were organized in all the regional medical centers in serbia. as all our activities, and especially the new method of nidcap care, became increasingly known, the members of the nidcap team were invited to share their knowledge and experience. they have given presentations and organized workshops in several maternity and childrens’ hospitals in belgrade, other cities in serbia, and even in the greater region. there is, of course, still a lot of space for further education on developmental care in serbia. perhaps the fine programme should be considered for the beginning, and nidcap as the next step for those more interested and willing to get involved in greater depth. funding for education in developmental care is still a challenge that has to be resolved and where we constantly seek support. we are very proud of the fact that our institute and our country were the first in the region (serbia also being eighth in europe) to begin nidcap education and implementation. we started the education in nidcap in an attempt to expand our knowledge and improve the care and outcome of the babies at the institute. though honestly, the result was incomparably higher. newborn care in hospitals has been improved all over the country, providing tangible, measurable results. and above all, the awareness of the specific needs and the interest in the wellbeing of preterm babies and their families has been elevated to a much higher level. this gives us all a strong encouragement to continue on the same path with equal effort and passion. the first family and first skin-to-skin contact in the newly opened kmc room. photo taken by father (art photographer) ivan jekic, seen in the mirror. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 14 • 2021 • developmental observer column editor – debra paul, otr/l fa m i ly v o i c e s heartbreak and hope during the pandemic lindsay gilmore our pregnancy story begins as most do. kyle and i became pregnant just a few months after officially deciding that we were ready for the new adventure of a child. we felt overly excited despite the typical dose of apprehension. my pregnancy consisted of the average morning sickness, body aches, and back pain; without fail all my symptoms were affirmed by the pregnancy apps that i would reference religiously. what was not average was the rise of a pandemic in my third trimester, one we have now all been impacted by in countless ways. at first, for us, this simply meant that we could hunker down together at home. i could do my best to teach middle schoolers online and my husband was being paid to stay home for a short time from his government job. this allowed us to do slow jogs together, cook yummy food, and prepare the nursery for the arrival of our sweet baby. we both felt quite happy in our new quarantine and i felt lucky for the chance to succumb to my aching and tired limbs. on april 1st, 2020, week 31 of pregnancy, we had a perfectly routine ultrasound, except for the new personal protective equipment (ppe) that our doctors and nurses were brandishing, of course. it was just two days later that the pregnancy took a startling turn. the baby inside of me, which we had yet to know was a boy or a girl, was quite the acrobat. our baby moved predictably, and i could trust that around 7:30 each evening i would feel a fury of movement. i will always be so grateful for this predictability, as it is one of many things that would come to save the life of our sweet baby girl. come thursday evening, i didn’t feel the baby move as i typically would, but i did feel a series of irregular braxton hicks contractions. i assumed that the lack of fetal movement was simply replaced by another typical sensation. the next day, while remote teaching on zoom (video conferencing), i recall pausing to notice and wonder what was keeping my baby so quiet, as i had yet to feel any noticeable movement that day. while i knew that fetal movement often decreased later in term, i nevertheless felt unsettled about the lack of motion. something didn’t feel right. the day went on as i played mental ping pong, alternating between feeling as if i was being overly dramatic, and then feeling genuinely concerned. come nine pm that night, after trying everything google told me to-jumping jacks, chocolate milk, a bright light, talking loudly, glass after glass of juice, i still felt nothing and finally decided to call my provider. thankfully, the on-call obstetrician (ob) that night listened intently and wasted no time validating my concern. her responsiveness was yet another life saving measure. she later told me that knowing what she knows now, she guesses that our baby girl had only about two more hours of life left in utero, had we not quickly found her a way out. the next few hours were spent getting checked in to the local hospital and assessing the situation. what kyle and i deemed routine protocol, ultimately led to the appearance of my ob and a team of nurses, dressed for surgery. typically, medical emergencies would be flown down to denver, as we were in a small mountain community without the same level of care, nearing the end of our nicu journey at 40 weeks. doi: 10.14434/do.v14i1.31814 the journey of having an infant in the intensive care setting is a life altering event; one that many parents are not anticipating and will not soon forget. covid-19 and the challenges associated with it have had a profound impact on infants and families whose life starts in the nicu. we have heard from our nicu colleagues across the world regarding policy changes in the face of the pandemic including restrictions in parents being with their infant which of course, has compounded the overwhelming stress and sadness parents experience. in this article, lindsay gilmore shares the story of her family’s experience in the nicu at the onset of the pandemic and how they navigated it with courage and hope. developmental observer • 2021 • 15 but it was decided that our baby was in immediate danger and we didn’t have the necessary time for travel. instead, kyle and i were informed that a children’s hospital colorado nicu flight team would arrive to meet our baby upon birth. at 1:51 am on april 3rd, luka lorene, was born extremely ill at 3 pounds, 5 ounces (1587 gram). with a low hematocrit of 6 (g/dl) and a low hemoglobin of 2, (g/dl) she had an acute loss of blood and oxygen. as it turns out, the nicu flight team was significantly delayed due to weather, and so the team at our local hospital stepped up and helped to maintain our daughter’s life. after an incredibly traumatic few hours, the nicu team arrived and luka was finally transported down to the children’s hospital in aurora, colorado. kyle left to meet luka as she arrived at the hospital, and our nicu journey began. the next 24 hours were the most difficult of our lives as we fielded conversations about how sick our daughter was and heard expectations of her outcomes-these were face to face conversations for kyle, and communicated over the phone to me, as i remained in a different county. there was immediate confusion about why luka was so sick and what went so wrong in utero. as there was no obvious explanation, doctors wondered if perhaps covid-19 was to blame. she and i were tested but had to wait some time for results. when we received word that luka wasn’t expected to make it through the night, there was back and forth discussions about whether or not it would be safe for me to be reunited with her. a plan was made to discharge me under the premise that i was infected with covid-19, and so i left in the hands of my parents to be driven to denver 15 hours after my emergency c-section. i arrived at the “dirty hall”-the space that was reserved for those suspected of covid-19 and took in the harsh sights and sounds of the nicu. the following hours continued to be a blur, but it was a comfort to touch the arms and legs of my sweet girl through the plastic walls of her isolette. the myriad of bells and alarms continued to ring in our ears as we watched many people come in and out of the room, managing the countless wires and tubes coming from her body and at times, attending to us. at the time, i didn’t know who these people were, but i now know it was her exceptional team of doctors, nurses, respiratory therapists, ultrasound techs, nurse practitioners, social workers, specialists, and the like. it looked as if we were in outer space, as they had ppe from head to toe and this being early april, not even masks felt commonplace. it was all so out of body, and beyond terrifying. being the fighter she is, luka made it through the night. while her organs began to rebound, there continued to be trepidation about her outcomes. given that she was without oxygen for seven and a half minutes at birth, we were prepared for significant impact and insult to her brain. we were warned that she may not walk, talk, or play. miraculously, her brain magnetic resonance imaging (mri) scan a week later showed only mild brain trauma and she had no signs of seizures-we rejoiced! within one week, she had weaned off her ventilator, was opening her eyes, and her organs all seemed to be improving their function with every day. while we felt so encouraged by luka’s progress, the growing impact of covid-19 was creeping into the hospital and complicating an already difficult time. six days after we arrived at the nicu, the hospital enacted a one visitor per room policy. this was hard to swallow, as neither kyle nor i could imagine losing time near luka or each other. we had incredible support and advocacy from our nicu care team, and they advocated for us to receive an exception for the first eight days while i continued to heal from my caesarean section. this was granted. because we lived at a distance from the hospital, we had been spending each night either in a hospital sleeper room or the hospital room itself, and so moving forward we were allowed to both be present in the hospital at the same time, just not together in luka’s hospital room. while this arrangement still created significant logistical issues and felt lonely and isolating, we felt so lucky for the exceptions. thankfully, this policy ended about a month later, and its end was met with great relief. the days transitioned to weeks, and eventually the weeks transitioned to months. we found our routines in the nicu. i became consumed with pumping and increasing my milk supply, asking for lactation support as often as i could. kyle became a master at coordinating our daily meals, keeping my water bottle full, and doing his part in skin to skin. we were solely focused on doing everything we could for luka and relished the opportunity to hold her for hours at a time, once we were finally able to do so. there were many lows-mastitis, a mysterious infection luka at one week of age luka at 5 months, celebrating being oxygen free by going on her first camping trip! 16 • 2021 • developmental observer in luka’s gland, disagreeing specialists, new iv’s (intravenous therapy), bradycardia events, and transfusions, but the highs overwhelmed them all. we delighted in her growth and the continued good news about her development. her occupational and physical therapy visits left us most encouraged; we appreciated the tangible advice and skills that we received from her ot and pt specialists, as we always felt more empowered to support luka. as luka’s rounds began to occur later in the day and at a much more rapid pace, we knew that we were nearing the end of our nicu stay. after 59 nights of sleeping at children’s hospital, it was finally time to leave. we were overwhelmed with joy that luka was healthy and ready to come home, but there was a deep sadness over saying goodbye to the people that had seen us through the most difficult experience of our lives. our gratitude for this team is without measure. their listening and encouragement, their secret hugs (in the time of covid-19), and their expertise left us in awe on a daily basis. we only just wish we were more acquainted with their beautiful faces; after so much time spent together, it was always a fun surprise if we caught a glimpse of anything more than their eyes below their masks. another pandemic reality. we still do not have answers about what went wrong in utero. there are theories-luka has a blood disorder, we experienced a fetomaternal hemorrhage, or she was on her way to a still-birth. the doctors still maintain that it’s a relative mystery. the best explanation came from one of our favorite neonatal nurse practitioners when she said, “consider yourself hit by lightning.” in the same way, we understand that it was only with answered prayers and pure luck that today, luka is thriving. we know full well that many nicu stories are without a happy ending and so we are beyond thankful that our prayers were answered in this way. for now, we treasure luka’s pure existence and feel blessed to be her parents. luka is now a happy 9 months and the gilmores are living their best life in the mountains of breckenridge, colorado. how you can celebrate » promote nidcap and the world day in your nursery and hospital » wear teal » have an afternoon or morning tea for your staff and families » celebrate and promote what your team has achieved in the past 12 months » share photos and posts on social media using #nidcap, #nidcappartneringwithfamilies and  #worldnidcapday » approach local news agencies for a story about nidcap in your unit/hospital » illuminate landmarks in your area in the nfi color teal » download promotional fact sheets, poster templates, the wnd logo world nidcap day march 20th 2021 developmental observer • 2021 • 17 upcoming events please register here: https://us02web.zoom.us/webinar/register/wn_fng5rjgbs9gegu16hbrybg the webinar is free for everyone. registration is required. 18 • 2021 • developmental observer the uk nidcap centre was originally based at st mary’s hospital in london with inga warren cbe, primary author of the fine programme, as senior nidcap trainer. following mergers and reorganisation of hospitals within the trusts, the training centre moved down the road to uclh, london nhs foundation trust in 2017. the centre director is professor neil marlow with dr. giles kendall, clinical lead for the neonatal unit (nnu), as operational director. the core strategic team is comprised of senior neonatal staff including the lead nurse and two additional consultants, and education and development team representatives. the group is chaired by a parent representative, the mother of a girl born extremely preterm 15 years ago and cared for at uclh. unfortunately, a current team photo is not available due to covid-19 restrictions. the objectives of the uk nidcap centre are to deliver a unique educational programme designed to promote optimal developmental outcomes for high risk preterm and full term babies, and to improve the experience of hospital care for infants and parents. an additional aim is to create infant and family centered developmental care leaders in the uk. to achieve our objectives, teaching is a prime focus with routinely scheduled fine level 1 and 2 courses run by nidcap professionals. attendance at these courses is a pre-requisite for those intending to progress to nidcap training. pre-fine education has been trialled and is currently being adapted for online use in collaboration with the australasian nidcap training centre. the idea is to incorporate this into induction for new staff, so they begin to associate the impact of their input and interactions on brain development. fine level 3, which supports innovation and leadership, has also been available with inga warren and beverley hicks as mentors. a quality improvement project on non-pharmacological pain management undertaken by one participant, a neonatal consultant, was recently presented at an international conference1. we strive to provide ongoing contact and support for fine 2 and nidcap training centers around the world the uk nidcap centre at university college london hospital (uclh) doi 10.14434/do.v14i1.31815 the neonatal team, uclh, celebrating world prematurity day with 'superheroes' theme developmental observer • 2021 • 19 nidcap graduates through masterclasses, the most recent being held in london and bristol. on a wider scale, both trainers, inga warren and gillian kennedy present regularly at interna tional conferences. inga warren also runs fine courses abroad with other faculty members who are all nidcap professionals. the courses in hungary and romania have been run in collaboration with parent organisations. additionally, both inga warren and gillian kennedy are actively involved in research and development, with two publications produced this year relating to infant and family centred care2,3. research involving the use of our angel eye© webcam on the neonatal unit is in progress. the origins of this research links back to the 2016 nidcap trainers meeting journal club in bologna, italy and the subsequent 2017 presentation at the congress of joint european neonatal societies (jens) in venice. in preparation for this, staff were surveyed for their views on the introduction of webcams. the information garnered from the survey is forming part of the research study. the same team is also keen to explore the impact of masks on language development in partnership with other centres to enable comparison between units where practice has varied. where possible, we promote the nidcap philosophy in a wider arena. inga warren frequently works jointly on projects with our nidcap colleagues around the world4. gillian kennedy is an expert advisor for the national institute for clinical excellence (nice) and was a committee member for the guideline on specialist neonatal respiratory care. in 2020, the coronavirus pandemic began impacting babies cared for in neonatal units and their families worldwide. even within the same city, neonatal units adopted different practices, with some restricting parental presence and/or requiring masks be worn. here at uclh, our nidcap centre base, the ethos of not separating babies and parents has been maintained, although siblings and other close family members are currently not able to be present. guided by our infection control nurse lead, also a senior neonatal nurse, parents who are asymptomatic have unrestricted access and are not required to do any more than the usual handwashing practice. no protective aprons, gloves or masks are worn, and both parents are welcome to be with their baby for as long as they want. unsurprisingly, covid-19 has had a negative effect on wider ranging matters related to the uk nidcap centre. at the start of 2019, there was agreement of the need to establish a new trainer-in-training position and approval was given by the nfi board. the intention was to identify funding from the women’s health directorate to fulfil this aim by augmenting monies generated from running fine courses at the trust. regrettably, the introduction in march last year of a new electronic patient record system and the current ongoing health crisis are issues which, understandably, have taken priority and redirected resources. nevertheless, the future looks brighter with more robust measures closer to being ratified which would allow us to begin this training. this situation perhaps brings to light a situation which may impact others in the nidcap community. the move from st. mary’s to uclh plus intervening factors described above have meant the centre is still becoming established on this site. in addition to this, the present trainers are of retirement age (although much younger in spirit!). both factors provide extra challenges for the new trainer-in-training and thought is being given as to how best we can support this individual, such as inga warren and gillian kennedy obtaining honorary contracts to enable ongoing neonatal unit input and contact. in response to the pandemic, we have tried to adapt our teaching methods and now deliver fine 2 courses online. the adaptation of fine 2 for remote teaching has been far easier than the current project of preparing fine 1 (foundation toolkit) for online accessibility. that said, this is also nearly ready to be trialed in the format of shortened lectures with creative solutions to the more practical elements of the course. in some ways the increase in video conferencing has opened possibilities. our developmental group had ground to a halt, not so much due to lack of interest, rather more to do with staff availability to attend and participate. now staff can join in wherever they are with the meetings timed to suit those who are on shift. we are approaching topics differently, tasking ourselves to explore our current stances and beliefs about subjects. participants who have reservations about areas under discussion take the lead on literature searches into the subject, endeavouring to find a balance in the evidence base. this is proving to open our minds and inspire more inclusive planning. despite the challenges of the past year, we celebrated world prematurity day in fine style! with the theme of ‘superheroes’, staff donned t-shirts (batman and robin clearly ended up wearing two masks each!) and the babies all received a hand crocheted small blanket shaped like a superhero cape. naturally, food was shared and enjoyed with one of the junior doctors making a wonderful cake. this joyous occasion and the recent more positive news about a potential trainer-in-training contributed to an uplifting end to 2020. references: 1. akeyempon a, hicks b, warren i. non-pharmacological pain & stress management: fine 3 quality improvement project. the 31st nidcap trainers meeting, 21-23 october 2020. 2. mendizabal-espinosa rm, warren i. non evidence-based beliefs increase inequalities in the provision of infant and family centred neonatal care. acta paediatrica. 2020, 109(2):314320. doi: 10.1111/apa.14972. 3. tan a, pelone f, arnold s, anderson j, kennedy g, goodmand j. support and information needs of parents and carers of preterm babies requiring respiratory support on the neonatal unit: a qualitative systematic review. journal of neonatal nursing. 2020, 26:93–100. doi:10.1016/j.jnn.2019.11.003. 4. warren i. education in the age of glance. the virtual 2020 stockholm conference on ultra-early intervention, 19 march 2020. inga warren (l) and gillian kennedy are actively involved in research and developement 20 • 2021 • developmental observer julia giesen, nidcap professional edmonton, canada p o e t ' s c o r n e r today i tried something new to change my usual point of view from seeing through the baby’s eyes to focus on what i could surmise for tips and tricks i could relay to nurses to improve their day what could i glean from what i feel this little one tries to reveal what kind of help does he need how can i teach a nurse to read his cues and signs of hanging on keeping it together, then moving on slipping down, losing touch when all of it becomes too much when breathing pauses get drawn out and he has nothing left to shout that he really needs our help but has no energy to yelp how can we leave him at his best so he can breathe and get some rest moving softly into sleep that is robust, healing and deep so that when he does awaken energy is not from him taken to open his eyes and turn his head and look up out of his bed and meet the eyes he’s coming to know will be there always to watch him grow —julia giesen “what can i say?” doi: 10.14434/do.v14i1.31819 hello again from edmonton! julia giesen here with a second reflection to share from my nidcap training. this poem is from an observation in july 2019, this time on a little boy named benson. benson was born at 30 weeks and was six days old. for this observation my trainer asked me to think about what i would like to communicate to the nurse looking after him in the nicu. i watched as little benson paused in his breathing for longer and longer, dropping off to become unavailable. i recalled my nidcap trainer saying one goal of every newborn is to interact with his or her caregivers. i had so many questions running through my head. developmental observer • 2021 • 21 developmental observer the official newsletter of the nidcap® federation international developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ 2021 vol. 14 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “all things are bound together. all things connect.” chief seattle a suquamish and duwamish first nation chief greetings from the editor welcome to our first issue for 2021. let us hope that this year will be kinder, and we may start to move forward and heal together. looking back on 2020 several themes have emerged from the impact of the pandemic. firstly, during the challenges of covid-19 restrictions the strength of families and staff are demonstrated through several abstracts from the nidcap trainers meeting. the group from modena showed if staff feel offering kangaroo care is safe then parents become involved with less stress. the team from beirut revealed that despite restrictions of covid-19 kangaroo sessions can increase. the group from rimini nicely demonstrated that if staff are supported, they in turn support parents to be involved in their baby’s care. the second theme focussed on how we strive to improve what we do. the graven’s group presented the important standards for infant and family developmental care to guide our practice, and we heard about how the pdsa quality cycle can be used to change practice.lindsay gilmore, a mother, in her insightful article heartbreak and hope during the pandemic gives us an understanding of the stress families experience. we learn about the success of innovation through the little readers read-a-thon from therese gisondi, and julia giesen returns with another perceptive poem in poets corner. despite the challenges we have all encountered this past year, the uk nidcap centre demonstrates how covid-19 impacted on the work of their centre and how they adapted to ensure their goals were met. inga warren, nidcap trainer received a commander of the british empire (cbe) in recognition of her work with premature infants and training. we learn about the amazing work in serbia in giving nidcap and developmental care a focus. we can learn from these interesting articles and the innovative ways we all strive to improve the care and experiences of the babies and their families. kaye spence am senior editor – developmental observer adjunct associate professor/ clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university/australia table of contentseditorial ...................................................... 1 abstracts .................................................... 2 little readers read-a-thon winner .... 10 little readers read-a-thon australia .................................................. 11 global perspectives ............................... 12 family voices .......................................... 14 poet's corner .......................................... 17 nidcap training centers around the world ........................................................ 18 members' contributions ......................... 20 nidcap on the web ................................ 23 issn: 2689-2650 (online) do 14:1 full issue doi: 10.14434/do.v14i1.31806 abstract edition kaye spence, am doi: 10.14434/do.v14i1.31807 nidcap care in the moment ibeatquia et aut fuga. ut perovidebis nidcap federation international board of directors and staff 2020–2021 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com maria lopez maestro, md, phd nidcap trainer hospital universitario 12 de octubre nidcap training center email: mariamaestro@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu issn: 2689-2650 (online) all published items have a unique document identifier (doi) 22 • 2021 • developmental observer nidcap on the web the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap training centers – facebook pages during the past six months, despite the adversity facing the nidcap training centers and nidcap professionals worldwide, many positive achievements have taken place. this series of snapshots from the various training centers enable us to all celebrate and acknowledge each other’s achievements. follow us on all of our social media platforms: like us on facebook follow our posts on instagram watch our videos on you tube connect with colleagues on linkedin read and participate on our nidcap blog follow us on twitter http://nidcap.org/blog/ sandra.kosta@nidcap.org https://www.facebook.com/nidcap.france https://www.facebook.com/nidcap https://www.facebook.com/nidcapporto.s.joao https://www.facebook.com/nidcapaustralia https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829 https://www.facebook.com/nidcap https://www.facebook.com/nidcapkarolinska https://www.facebook.com/nidcap https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international https://www.facebook.com/nidcap https://www.pinterest.com/nidcap/ https://www.youtube.com/user/nidcapfi https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international http://nidcap.org/blog/ http://nidcap.org/blog/ https://twitter.com/nidcap www.nidcap.org become a member of the nfi the nfi invites you to join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org nidcap training centers americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james helm, phd email: jimhelm27@gmail.com nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, mn contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: majken grund nielsen, rn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail.com rimini nidcap training center ausl romagna, infermi hospital rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, obe, msc email: gillian.kennedy4@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il http://nidcap.org/en/about-us/membership-overview/ developmental observer • 2019 • 19 as every nidcap practitioner or student knows, a behaving infant continuously presents troves, if not torrents of observational information. the science and art of nidcap observations reside, in part, in the extraction of meaningful portions of these behavioral data. a recent report by griffith, rankin, and white-traut (2017) illustrates the principle that behavior provides a wealth of information. at times, there may be such a storehouse of riches that a database can be tapped for knowledge beyond that which inspired the original investigation! indeed, the present target article is such a “secondary analysis”. originally, there was conducted a large, randomized control study (rct) of a developmental intervention for preterm babies. for the present report the authors extracted quantitated observations made in the one-minute prior to the major manipulation that was being studied. from the data in that pre-trial period and in part of the feeding data, the present study was created. thus, griffith et al. examined "the relationship between behavioral states and oral feeding efficiency in preterm infants". with this secondary analysis, they were able to make some valuable contributions. i’ll discuss a few points that might be of interest to developmental observer readers. the end-point in their analysis was oral feeding efficiency, measured in ml/min. the results were taken from the first 10 min of the 30 min feeding period in the rct. they limited the interval for the measure to avoid contamination by fatigue in some of the fragile babies. babies were held and fed by bottle by the research nurse. this was part of numerous steps of careful standardization. from video recordings of the 1-min pre-test period, each baby’s state was independently encoded by two trained observers, blind to the purpose of the study; inter-observer reliability was excellent (> 98%). for each 15-second segment of observation, the dominant (> 8-seconds) behavioral state (e.g., alert, sleep, drowsy, crying states) was determined. from these data, the proportion of time spent in each state was quantified and then examined in relation to the baby’s feeding efficiency. the researchers used a couple of different “regression” statistics to analyze the results. these methods enabled them to determine whether there were statistically significant relations between singular and combined variables for each baby and that baby’s feeding. although these are all correlational measures (and we understand that correlations do not prove causation), the various levels of each behavioral state as well as different characteristics of the babies (e.g., age, weight, risk assessment scores, etc) were built into the tests. this greatly strengthened the interpretive power of the correlational results. the outcomes were clear: the more time a baby was in alert states in the minute before feeding, the greater the feeding efficiency. conversely, the greater the time spent in a sleep state in the pre-feeding minute, feeding efficiency was proportionately diminished. take a look at the paper: figure 1 shows that when a baby spends about 45 seconds of the pre-feeding minute in an alert state, feeding efficiency is about 50% greater than if they are in an alert state for 10 seconds! the authors were able to make some assertions concerning the meaning of their findings for nicu practice: careful assessment of infant behavioral state is vital for effective, developmentally-supportive feeding. avoid feeding when infants are sleeping; if a baby is in a drowsy state, use interventions such as sensory stimulation to help the baby transition to an alert state before attempting to feed orally. you will appreciate the value of nidcap observational skills in this context. it is worth noting that babies born preterm typically present a distinct “sleep architecture” that differs from that of term babies. young, prematurely born babies spend far more time in active sleep and, importantly, their development is marked by important changes in sleep-wake distributions as well as transitions between states. again, nidcap skills and sensitivities will serve you and the babies well for achieving superior support and care. there is more to absorb from the article; hopefully, this commentary is informative and will motivate you to read the full paper. you are certainly invited to discuss it on one of our forums. visit: https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5269441/ to access the full target article. target article: griffith, t., rankin, k., & white-traut, r. the relationship between behavioral states and oral feeding efficiency in preterm infants. advances in neonatal care, 2017;17(1), e12 – e19. a statement on state and feeding efficiency jeffrey r. alberts indiana university, nfi science committee, associate editor for science t h e s c i e n c e d e s k p ho to gr ap h by e m an ue l a ng el ic as developmental observer • 2019 • 19 https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5269441/ several years ago, the newborn intensive care nursery at the children’s regional hospital at cooper university hospital in camden, new jersey accepted the opportunity to be a pilot site for the nidcap nursery certification program. in the beginning, we entered this process in order to provide the nfi with the experience of working with a nursery that would likely require remedial work in order to attain certification. from the nfi’s perspective, cooper represented a nicu with a diverse population within an academic setting in an economically challenged city. from cooper’s perspective, this opportunity to go through the certification experience within the structure and support of the pilot process was a chance of a lifetime regardless of the less than optimal timing. lest you think that this is the beginning of cooper’s journey let me set the record straight. in 1994, sonia imaizumi, md came to cooper and discussed the nidcap program with her new colleague gary stahl, md and within a year the mid-atlantic nidcap center was established (1995) under the direction of deana demare, pt. cooper’s nicu has been committed to the provision of nidcap care for the past fifteen years. this philosophy of care would not be possible without the full support of both the nursing and physician leadership which began with charlotte tobiason, rn and frank briglia, md. over the years our nicu has continued to strive toward excellence in practice and to demonstrate the implementation of the nidcap philosophy of care through multidisciplinary collaborative care. as with many examples in life it turns out that the process is in many ways more important than the outcome due to the power of relationships. this was very evident at cooper during our thorough site self assessment utilizing the nearly 120 five point descriptive nidcap nursery certification criterion scales (nnccs). to enlist the participation of as many individuals as possible, the decision to participate in the nidcap nursery certification program had been made by the nicu clinical council. a small multidisciplinary group then met to assign various portions of the site assessment with the charge to go into the unit on both day and night shifts and facilitate the staff in coming to consensus on each of the nnccs descriptive ratings. there were many very heart warming stories brought up in the small staff group 2010 vol. 4 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international discovering collaborative pleasure and pride through the nidcap nursery certification process gretchen lawhon, rn, phd continued on page 2 table of contents discovering collaborative pleasure and pride through the nidcap nursery certification process ................................ 1 the growth of nfi membership ............. 3 nidcap training centers from around the world ...................................... 4 a message from the director of the nidcap nursery certification program ... 6 nidcap profile .......................................... 8 2009 marks major milestones for nidcap ..................................................... 10 family voices ........................................... 12 supporting families ................................ 13 developmental resources .................... 15 current developmental research ........ 16 letters to the editors .............................. 17 “when work, commitment, and pleasure all become one and you reach that deep well where passion lives, nothing is impossible.” nancy coey 2 • 2010 • developmental observer discussions that exemplified excellence in care such as when we discussed how we met the criteria for “caregiver’s understanding and sensitivity to parents and families.” one nurse shared her experience of having transferred a severely ill infant requiring high frequency ventilation to a large stretcher in order to facilitate the mother’s dream of being able to sleep with her son. our actual nncp site visit included four members of the nidcap federation representing medicine, psychology, education and nursing. sessions were held with the administration of the hospital, department of pediatrics and neonatology in addition to all disciplines involved in the nicu. the reviewers spent time in the unit and spoke with staff and family members. the review team’s feedback acknowledged our significant level of nidcap care implementation with an offer for an extension for further integration and subsequent review within a year. despite our inability to obtain the certification, the staff felt such a boost of energy and encouragement from the process that we gathered momentum. for the next ten months, we accumulated photos and stories demonstrating exemplary developmental care to contribute to our compilation of “evidence” to present to our review team within the year. one of the areas we realized needed improvement was in our care of one another as staff. upon reflection we decided it was time to take ownership of caring for one another and in the process we renovated our small staff lounge. the staff mailboxes were moved to another location and a group volunteered and managed to get the room painted in a color that was soothing while one nurse made a curtain for the window. decisions were made to create areas designed to meet the social needs of the staff rather than to be inundated with professional notices and messages. the most significant result of this process has been the value of our working together and carefully assessing our clinical practice in a reflective manner. there is tremendous value in taking the time to include as many individuals as possible in a process of self assessment especially when it includes necessary reflection on the manner in which we approach infants, families, and one another in the nicu. it is clear that our individual and collective attitude can compensate for the less controllable limitations in our physical environment. the most significant lesson has been the appreciation of the value of relationship-based care not only with our infants and families but with one another. cooper’s newborn intensive care unit achieved nidcap nursery certification culminating in a huge celebration last july 28th with heidelise als, phd presenting the award in our beautiful new lobby with many staff and families present. having been successful in our quest for nidcap nursery certification, we have a sense that we have reached a new level in our relationship-based caregiving. we are now committed as an entire staff to work toward developing the strategies to sustain our momentum and commitment to infants, families and one another. we will continue to further integrate the nidcap approach into our policies and procedures and in our evaluation process as well. it is essential that we have an ongoing assessment and re-evaluation process to maintain the level of quality in our practice. the journey toward nidcap nursery certification has been extremely gratifying as we worked together in carefully assessing our clinical practice in a reflective manner. it has been amazing to realize just how invested each staff member is to the quality of care provided. this process clearly enhanced our collaboration with one another as professionals as well as with our infants and their families. we have gained a clear sense of pleasure and pride in the work being done in our nicu and have greater sensitivity and awareness of our own words and actions on a daily and nightly basis. a semi-annual publication of the nidcap federation international © 2010. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd printed on recycled paper nidcap federation international (nfi) contributions we would like to thank all of our individual donors and the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation developmental observer developmental observer • 2010 • 3 in 2001, the nidcap federation international (nfi) was founded with twenty-six members. at that time, only nidcap trainers, training center directors, and members of the nfi board of directors were members. one of the goals of the nfi was to oversee nidcaprelated work and create an organization that could eventually support advancement of developmental care in all nurseries. nidcap training had expanded to hundreds of health care professionals and it required an organizational structure to help support these professionals and support the further development of nidcap. the nfi was developed to provide this structure and infrastructure around which training could grow while maintaining the standards of a small group. the following provides a brief overview of the growth and evolution of the nfi membership. as the nfi organizational structure developed over the first several years, membership issues were discussed and debated. nidcap has always been multidisciplinary and it is recognized that a wide variety of roles are necessary for successful implementation of this process. the nfi board wished to offer membership to those individuals at training centers who currently supported the work of the nfi in addition to trainers and training center directors. in october 2005, the nfi by-laws were amended to allow the nfi board of directors to expand membership and to create special categories and other official associations to the nfi. the board invited all professionals who were nidcap certified, now designated as nidcap professionals, to join as well. further, it was determined that trainers-in-training should be offered membership. the board also felt that it was important to bring all nidcap trainees into the process, so student membership was created. professionals training in the nidcap approach to care could thus become student members for up to three years as they trained. by april 2006, membership categories were agreed upon and as of june 2006 the nfi was open for nominations and applications for new members. there were various edits and clarifications to this process through october 2006 as the membership continued to grow. more milestones occurred during january 2007 when the board discussed the creation of another new category of members—family members. first the board approved the creation of two additional directors for the board. these included two seats for family representatives. family memberships were officially approved in may 2007. family membership is open to any parent or extended family member who supports the mission and goals of the nfi and who has an infant who is currently or was previously cared for in a newborn intensive or special care nursery. nicu graduates may, themselves, also apply for membership the nfi has recognized emeritus members for several years and the definition and process for this special category was formally clarified during the april 2009 meeting. at that time the board also created and defined an honorary membership category. emeritus members are nominated from the membership, and honorary members are nominated from outside the membership. both of these categories were formulated to recognize special individual contributions to nfi and/or nidcap. currently there are four emeritus members and one honorary member. these special members are described below. emeritus members martha holmes, msw, lcsw, director of the oklahoma infant transition program, was introduced to nidcap, through a suggestion from linda gilkerson, phd. she met heidelise als, phd and gretchen lawhon, rn, phd and started nidcap training after a week-long workshop with linda and project welcome, a federally funded grant that addressed the needs of nicu graduates and was administered at wheelock college, boston, massachusetts. when martha returned to oklahoma city, her visionary leadership along with major support and contributions from roger sheldon, md and joy browne, phd, pcns-bc, imh (iv) mentor led to the first nidcap training center outside of boston. the sooner nidcap training center was established in 1986. elsa sell, md, a neonatologist from tucson, arizona was also involved in developmentally supportive care from the earliest days. she was the first physician to become a nidcap trainer. elsa also became the second apib trainer, and was instrumental in guiding arizona to require professionals in developmental care to be part of nurseries across their state. as an attending neonatologist at arizona university medical center, in tucson, arizona, elsa directed the sahuaro nidcap and apib training center for many years. susann hill-mangan ma, lpc was a nidcap trainer with elsa sell, md. initially susan was elsa’s research assistant, and administered dr. t. berry brazelton’s neonatal behavioral assessment scale (nbas)1 evaluations. her understanding of the challenges in implementing nidcap led to the development of the advanced practicum.2 in addition, susann’s behind-the-scenes expertise contributed greatly to and facilitated arizona’s statewide support of developmentally supportive care requirements in newborn intensive care nurseries. jean gardner cole, ms also became interested in nidcap through work with the nbas. she was trained by kevin nugent, phd, then worked with linda gilkerson, phd and project welcome. jean later became an nbas trainer traveling the world with dr. brazelton and his team. she met dr. als when they both became nbas trainers. during that time deborah buehler, phd was an undergraduate assistant to dr. als. drs. als and buehler supported jean to become a nidcap trainer in 1993. jean trained out of boston city hospital (now boston medical center). she is known for her the growth of nfi membership jim helm, phd continued on page 18 4 • 2010 • developmental observer “the voyage of real discovery consists not in seeking new landscapes but in having new eyes.” –marcel proust st. luke’s began its nidcap voyage when it was selected to participate in the nicu transition project. this federally funded grant (us department of education) provided training to hospital nicu staff in the nidcap approach to care. it also provided training to community early intervention staff in the administration of the infant behavioral assessment (iba).1 both rodd hedlund, med, and gretchen lawhon, rn, phd came to boise, idaho in october of 1989 to train health care and community early intervention professionals in these two neurobehavioral assessment and intervention programs. the day our group met gretchen and rodd was an exciting one. there were four individuals from the nicu that were to take nidcap training and three persons from our hospital who were to take iba training. this training provided concentrated study; individual observations and reports were required by each trainee. by the time i received my nidcap reliability, i knew i wanted to become a nidcap trainer. i assumed that anyone who was exposed to the nidcap program and took care of sensitive infants would be interested in becoming nidcap reliable. i asked gretchen what i would need to do to become a trainer. she calmly took a very small piece of paper (a “post-it” note) and wrote down that i would need to become reliable in the apib;2 develop my own nidcap lecture and bedside demonstration; and bring trainees to reliability. she explained to me that i needed to talk with dr. als for more details about the training process. i carried that post-it note in my day planner for the next six years. actually i still have it. even after we became a training center, it remains my lucky note. when i spoke with dr als, she made it clear i needed the support from my hospital administration in pursuing this process. i spoke with the medical director of the nicu, who was supportive of increasing developmental awareness and care in the nicu. cheryl weedon, bsn, ms, another nurse who also was interested in becoming a trainer, and i then made an appointment to meet with the vice president of nursing, sharon lee, bsn, msn at our hospital. after we presented the nidcap program, she expressed her belief that this program was certainly in line with our hospital’s philosophy and she expected that there would be support from hospital administration to pursue becoming a nidcap training center. the vice president of nursing stated that we would need to develop a five year plan and provide more information on the costs involved, as well as a budget for the program. she wanted us to present the plan to the executive board of the hospital. cheryl and i worked on a proposal describing nidcap and a plan for the development of a training center to present to the hospital’s executive board for funding. we rehearsed our presentation by practicing with the medical director and the vice president of nursing as our audience. they coached us on our presentation and then went with us to the meeting with the board. the executive and financial officers of the hospital were very supportive of the plan to develop a nidcap training center at st. luke’s. though the financial director rubbed his head and said that we had underestimated the cost of the venture, he smiled and volunteered to work with us to revise the budget. cheryl and i worked with vera fink bsn, msn, the administrator for women’s and children’s services at st. luke’s, to clarify the organizational plan for the development of the nidcap training center. together we formulated a three year plan. cheryl and i began our apib training a few months later and attended our first nidcap trainers meeting in estes park, colorado in 1992. during that first year cheryl decided that the path to becoming a nidcap trainer was not for her and withdrew from the process. cheryl continues to provide nidcap observations in our nicu and to make significant contributions to our developmental interventions group. i continued on with my studies; working in the nicu; developing my nidcap lecture; and working with the nicu manager and administrator st.luke’s nidcap training center karen smith, rnc, med, and julie swanson, rn, bsn karen smith, rnc, med n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d developmental observer • 2010 • 5 to select the first trainees for the nidcap training center in the process of development. the first nidcap lecture i presented at st. luke’s nicu was well attended. my trainees, a nurse and occupational therapist, were in the first row eagerly soaking up the lecture information. this day was followed by an equally successful demonstration day. other staff interested in nidcap training took part in bedside days over the following months. nidcap lectures and small workshops on developmentally sensitive caregiving were also presented. the nidcap trainees practiced their observations diligently. work day sessions were long though invigorating. we all managed to keep our energy up and directed towards our goal of becoming a nidcap training center. this training continued over twenty months. in the summer of 1995, with the successful completion of my trainees’ reliability, st. luke’s became a nidcap training center. we came in on our “due date” as our administrator vera fink liked to say. the three year time line for the training center’s development had worked. our hospital and nicu were thrilled. our voyage as a new nidcap training center continued as we expanded our training to areas outside of our own center, not only to units in the us, but to some in europe as well. the interest in developmental care and nidcap began to increase in many nicus around the world. our commitment as a training center to demonstrating the highest level of developmentally supportive care was now stronger than ever in our own setting. as developmentally sensitive care providers we began in earnest to contribute ideas to the design plan of our new fifty bed semi-private room nicu. prior to construction we attended the graven conference with our architects. our new nicu, which was to be part of a ten story addition to the hospital, was completed in 2002. we moved into the unit in march of that year, and soon thereafter, we realized the bed number was still inadequate for the number of infants that needed our care. fortunately a number of rooms had been built to allow for expansion, so eleven more beds were added to the unit. we have added two more hospitals with nicus to the st. luke’s system: 1) st. luke’s meridian medical center; and 2) st. luke’s magic valley medical center. the nidcap training center, here at st. luke’s, has made, and continues to make strong efforts to be supportive to professionals in providing developmentally sensitive family centered care. at st. luke’s magic valley medical center we are building a new hospital which will include an eighteen bed nicu with private rooms. we have provided nidcap training at this site and are working with four new trainees. since the demand for training has increased, we have entered the process of training another nidcap professional to become a nidcap trainer, julie swanson, rn, bsn. julie has been developing her lecture and beginning bedside work and will be starting with her two trainees in 2010. julie has been working with our meridian medical center nicu with developmental rounds, educational offerings and nidcap observations. her trainees will come from this site and will have opportunities to study at our boise campus as well. providing the highest level of developmentally sensitive family centered care has been a priority for us from the beginning of our exposure to nidcap training. st. luke’s has consistently been committed to improving care and practice in our center. it has also been fortunate over the years to have the support of family volunteers in our nicu. the relationship with and support from these graduate families have also inspired and assisted us in improving our nursery, and designing our nicus and services with families’ input in mind. our family advisory board, comprised of 20 families, contributes their special insight into what families need in the nicu and beyond. as a training center, we have hosted the nidcap trainers meeting twice in idaho. we are surrounded by a beautiful environment which we envisioned sharing with other trainers, even before we were a training center. both trainers meetings, in mccall and sun valley, allowed us to share the places that give us our energy and determination. it is the west after all, where anything is possible. in 2007, we volunteered to be a pilot site for the nidcap nursery certification program.3 our nidcap nursery certification (nnc) site visit was a great experience for us. we were able to reminisce about how we have developed over the years and work toward our goals that we are determined to attain. the visit provided a burst of energy for our nursery and our staff. over the years of being a nidcap training center, our staff has enjoyed visitors to our nursery. we like sharing what we do and always feel we are learners in those experiences as well. we know that those professionals caring for infants in our setting are special and wanted to share that with them through the nnc site review experience. through this process, st. luke’s was the first nicu to be recognized as a nidcap certified nursery. we have been a nidcap training center for almost fifteen years now. we feel that each day provides an opportunity to make a difference to infants and families in our nicu. the phrase “changing the future for infants in intensive care” rings true for us. we know that nidcap changed our nursery and many of our lives. we want that change for every family we provide care for in our nicu. references: 1. hedlund re, tatarka, m. the infant behavioral assessment. 1986/1998. available from washington research institute, seattle,washington: washington research institute. www. ibaip.org. 2. als h, lester bm, tronick ez, & brazelton tb. manual for the assessment of preterm infants’ behavior (apib). in h. e. fitzgerald & b. m. lester & m. w. yogman (eds.), theory and research in behavioral pediatrics. 1982; 1: 65-132. new york: plenum press. 3. buehler d, smith k, als h. nidcap nursery certification program (nncp). developmental observer. 2009; 3(1): 1-4. 6 • 2010 • developmental observer as the recently appointed director of the nidcap nursery certification program (nncp),2 i have been asked to introduce myself to the nfi family and say a few words about the nncp. since december of 2009, i have begun to immerse myself in the work of the nncp steering committee and the nfi board as they have, in the last few years, been involved in the development of the nncp. two pilot nurseries have completed the process, resulting in nidcap nursery certification (nnc) of the newborn intensive care nurseries at: 1) st. luke’s regional medical center, boise, idaho (please see developmental observer, 2009, 3(1):1-4);2 and more recently at 2) the children’s regional hospital at cooper university hospital, camden, new jersey (please see this issue of the developmental observer, p. 1). in june of this year, an nnc site visit to a newborn intensive care nursery in the united states is scheduled as the third and last pilot site visit. in addition, two international sites are in the process of preparing materials for review by the nncp. final revisions are being made on many of the supporting materials of the nncp application process, evaluative tools, and modes of dissemination. these include: 1. nidcap nursery certification program (nncp): a guide to preparation, application, and implementation of nidcap nursery certification3 this guide provides a general introductory overview of nidcap and the supporting research to date, as well as specifically addressing: a) a detailed overview of nncp; b) nncp eligibility requirements; and the c) nncp application process with an illustrative flow chart. additional training documents pertinent to nidcap and nncp are also listed (e.g., nncp cost analysis, nncp participant roles, responsibilities and duties, etc.). 2. nncp application: part i4 this application includes: • the identification of the nursery applicant’s contact professional, administrative leadership, nicu nidcap leaders, and nicu interdisciplinary care team. • a description of the applicant’s hospital and nicu, including hospital accreditation and licensure; a description of the infant population served; and a report on nidcap training that the nicu staff may have received. • the assurance that the nicu leadership and staff are formally committed, across all disciplines, to practice the nidcap approach to care; and the assurance that financial resources are available for staff seeking further training in nidcap. • a description of the strengths and challenges of the applicant’s nursery regarding individualized, developmentally supportive family-centered care. • supporting evidence: ° a copy of the hospital and nursery’s mission statement(s), as well as goals and objectives; ° two examples of developmental care plans (e.g., nidcap writeup, developmental report); and ° six letters of support (i.e., nursing hospital leadership, financial hospital leadership, administrative hospital leadership for nicu, neonatology leadership, nicu nursing leadership, and family leader representative). 3. nncp application: part ii this application consists of two distinct evaluative tools, the nursery self-assessa message from the director of the nidcap nursery certification program rodd e. hedlund, med has been an active participant in nidcap over the past twenty years. he is a certified nidcap trainer, affiliated with the mid-atlantic nidcap center; currently serves as the senior editor for the developmental observer, serves on the washington research institute’s human subjects review board, seattle, wa; and is the director and master trainer of the infant behavioral assessment and intervention program (ibaip).1 he received his undergraduate degree in special education from washington state university (1976), and masters degree in early childhood special education, specialization in infant development, from the university of washington (1984). most of his funded research has been in social and neurobehavioral development of infants and young children with disabilities. rodd has served as the project director on five major federally funded grants and one foundation grant (leading to the development and further refinement of the ibaip). each of these grants involved neurobehavioral training components which addressed the needs of hospital nicu professionals, community early intervention professionals, paraprofessionals, and infants born prematurely and/or with disabilities and their families. rodd currently lives in lawrence, kansas with his partner of 17 years, thomas tuozzo, phd, professor of philosophy, university of kansas. developmental observer • 2010 • 7 ment questionnaire,5 and the nidcap nursery certification criterion scales (nnccs).6 the nursery self-assessment questionnaire asks the nursery applicant for detailed information with regard to: • hospital and nursery environmental characteristics; • specific leadership structures; • hospital/nicu structural and organizational characteristics; • developmental care support characteristics; • developmental care history and goals; and • descriptions of the dynamics of the relationships that currently exist between the nicu staff (e.g., nurse-to-nurse relationships, nurse-to-doctor relationships), as well as staff and administration relationships, and relationships that develop between staff and the families and infants that they care for. the nursery applicants rate their nursery using the nidcap nursery certification criterion scales (please see smith, buehler, and als6 for detailed description of the organization and administration of these scales). this tool assists an applicant nursery to assess itself on the level of quality and the degree of adherence to the key nidcap concepts of: individualization of all care and environmental aspects; family centeredness; developmental support for all infants and families cared for in the nursery; and developmental support for the staff involved in delivering such care. this process of self-evaluation serves to identify the nursery’s readiness for nidcap nursery certification. the nnc site review team scores the scales on the written materials submitted by the nursery applicant, and during the actual on-site visit (e.g., the review team’s observations and interviews with infants, families, hospital and nursery staff ). the nnccs are also used for: training and mentoring; documentation of change in the course of a nursery’s adoption of developmental care as framework of care delivery; documentation of the standard of care within a nursery; and examination of the relationship of environmental and caregiving parameters to infant, family, and staff functioning and satisfaction. 4. updated nncp description/materials on nfi website. these include: a revised description of the nncp, the nncp guide, nncp application: part i, nncp application: part ii (includes the nursery self-assessment questionnaire and the nidcap nursery certification criterion scales), and the nncp cost analysis document. these materials will be posted on the nfi website on or before the next nidcap trainers meeting, september, 2010. 5. outreach and dissemination of the nidcap nursery certification program via workshop presentations/poster sessions. slide and video presentations, for the purpose of nncp outreach and dissemination, are in development. workshop presentations are being planned. future nncp projects include the development of nncp site reviewer trainers, nncp site reviewers’ training program and a nncp site reviewers’ training manual with the goal of increasing the number of site reviewers available to conduct site visits. “nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all.”2 (p. 4) i’m very happy to assume the role of the director of the nncp, and i look forward to working with the nncp steering committee, nfi board and all current and future nncp applicant nurseries. --rodd e. hedlund for further information on the nidcap nursery certification program, please visit the nidcap website (www. nidcap.org) and/or contact: rodd e. hedlund, med director, nidcap nursery certification program phone: 785-856-nncp (6627) email: nncpdirector@nidcap.org references: 1. hedlund re. infant behavioral assessment and intervention program (ibaip). 2000. seattle, washington: washington research institute. www.ibaip.org. 2. buehler d, smith k, als h. nidcap nursery certification program (nncp). developmental observer. 2009; 3(1): 1-4. 3. hedlund r, smith k, buehler d, als h. nidcap nursery certification program (nncp): a guide to preparation, application and implementation of nidcap nursery certification. boston: nidcap federation international, 2010. 4. als h. nidcap nursery certification program (nncp): application part i. adapted from als, h (ed.) nidcap training: site assessment. 1994, 1997. 5. als h. nursery self-assessment questionnaire. adapted from als, h (ed.) nidcap training: site assessment. 1994, 1997. 6. smith k, buehler d, & als h. nidcap nursery certification criterion scales (nnccs). boston: nidcap federation international, 2008. developmental care in the moment holding and holding on to. 8 • 2010 • developmental observer linda gilkerson, phd has a long association with nidcap and has made a significant impact on the research and integration of its philosophy into practice. she is the director of both the irving b. harris infant studies program and the faculty development project on the brain at the erikson institute in chicago. her area of specialization is early intervention with infants and families, with special emphasis on high-risk children in hospital settings. dr. gilkerson’s research addresses the needs of infants and families in a wide range of settings including newborn intensive care units, early head start, childcare and teacher and caregiver’s education about brain development. linda directs the fussy baby network, erickson’s first clinical initiative. this network provides support to families who may have concerns about their infant’s development, health, crying, feeding, sleeping, or temperament. the fussy baby network provides several services including a call in line for parents, a home visiting program, a fussy baby clinic at the university of chicago, as well as parent support groups (for more information on this program please see: www.erikson.edu/fbn.aspx). linda is also conducting research on infant crying in collaboration with several of her colleagues at the university of illinois at chicago, the erickson institute, and the university of chicago. this research, entitled the “fussy baby study,” is examining the causes of excessive infant crying and how infant crying may relate to behavior and development (www.fussybabystudy@yahoo.com). linda directs project connect, an initiative that provides parent-child therapeutic services to young children in the foster care services and their families, with the goal of strengthening and reuniting families. she has served on the illinois interagency council for early intervention and has chaired the early care and education committee of the futures for kids initiative. as a board member of zero to three, she also chairs their infant mental health task force. linda has been instrumental in introducing, supporting and sustaining the integration of the reflective process within our work of providing relationship-based, family-centered, developmental care. as linda states, “developmental care is inherently reflective. there are no protocols that tell you exactly what to do. instead, ongoing observations and continuous feedback from the baby [as well as the family] guide care [and your interactions with them].”1 i had the opportunity and pleasure to interview linda during the 20th annual trainers meeting, “reflection: our vision for individualized developmental care,” that was held in chicago in october, 2009. ks: linda it is great to have this opportunity to learn more about you and how you see nidcap. may i start by finding out more about your professional background? lg: i started my career in education and then went back to school for three years to train as a social worker. i felt i needed to fill a gap and wanted to make the world a better place. ks: how did you become interested in early intervention? lg: i identify with people who are different. i was a fussy baby who was small for gestational age – i took my parents for a loop! i felt i wanted to reach out to those who are different – an individualized approach. ks: what is your motivation for the work that you are currently doing? lg: supporting people and providing mentorship. i have two doctoral students at the erikson institute and their work is really exciting. i try to support them through the system. ks: i noticed that your fussy baby network is on twitter – how do you find this new communication medium? lg: i need to figure out how it works! i see that it has potential to work for the parents. it seems easily accessible and i see it as contributing to discussions by the families. ks: what do you see as most exciting about nidcap? lg: it gives confidence to people – it gives me confidence. i see this as the standard of care in the nicu. i find the expansion into europe exciting and progressive. we do not seem as progressive here in the us. ks: what do you see as the future for nidcap? lg: i see a bright future ahead – nidcap is here to stay. we are now in our third generation with trainers and master trainers. institutions are using it as a standard of care, whether it is called linda gilkerson, phd n i d c a p p r o f i l e kaye spence, am, rn, rm, ms, fcn developmental observer • 2010 • 9 nidcap or not. i also see it as a movement coming from the parents; they are real collaborators in their baby’s care. ks: now i would like to ask you some questions that can give the reader an insight into linda and what makes you “tick.” how do you relax? lg: i have discovered yoga – it is simply the best. the last ten minutes are the best when you reach nirvana – my husband goes with me. i also find gardening meditative. i have a very messy garden which is a challenge. i like to call it my friendship garden – many of the plants were given to me by friends – when i am in my garden it makes me smile. ks: what a lovely picture you have created. is there a book which has left an impression on you? lg: the one that comes to mind is ‘learning from the patient’2 written by casement, a psychoanalyst. it made me think about how to be with others, also how to play with ideas. ks: what are some of your favorite places? lg: out west in colorado and new mexico. i learned to enjoy watching the world go by from a train. i was in a sleeper in a hammock, gently swinging – i felt so contained. ks: how do you like people to remember you? lg: as someone who is safe and someone to share with. i am also very persistent – i see this trait in my son. when i settle on something i usually get it. ks: thank you linda for sharing yourself with me and the readers. i have gained a lot from meeting you. is there anything else you would like to say? lg: yes, i will never forget sharing my life with heidi – a gift i treasure with all my heart. ks: thanks again – i can see why nidcap has such a solid foundation with people like you being the pioneers and supporting others in their accomplishments. references: 1. gilkerson, l. irving b. harris distinguished lecture: reflective supervision in infant-family program: adding clinical process to nonclinical settings. infant mental health journal. 2004; 25(4):424-439. as cited in hedlund, r, supporting and sustaining reflective practice. developmental observer. 2009; 3(2): 3. 2. casement pj. learning from the patient. new york, ny: guilford press. 1985. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. nidcap nursery certification program (nncp) the nidcap nursery certification program (nncp) under the auspices of the nidcap federation international (nfi) recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of the newborn individualized developmental care and assessment program (nidcap) for infants and their families. nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact nncp director at: www.nncpdirector@nidcap.org or 785-856-nncp (6627). 10 • 2010 • developmental observer years ago, the newborn individualized developmental care and assessment program (nidcap) was conceived. heidelise als, phd began studying premature infants by standing near their incubators and observing their behaviors and sensitivities. she made careful observations before, during and after caregiving, documenting subtle and not-so-subtle changes in posture, muscle tone, coloring, movement, breathing and more. the simplicity (yet detail!), straightforwardness and integrity of these observations led a number of nursery professionals to participate in the development of and training with nidcap. 30 years of research have documented improved outcomes for these infants and their families cared for with nidcap. years ago, the first nidcap certification was bestowed on gretchen lawhon, rn, phd, from the original nidcap training center in boston. one nidcap trainer has led to the current total of 22 nidcap trainers, one certified nidcap professional has led to many certified nidcap professionals, and one training center has led to the present 16 training centers. nidcap training continues to provide education and support to health care practitioners to facilitate the integration of nidcap at consistently high levels of implementation. 2009 marks major milestones for nidcap deborah buehler, phd 30 25 developmental observer • 2010 • 11 years ago, the first nidcap trainers meeting was held outside washington, d.c. from this meeting the nidcap federation international (nfi) formed, and in only eight years its membership has grown from 26 to 158 members. the nfi and these annual meetings continue to support a worldwide collaborative community of nidcap trainers, training center directors, professionals, families, and other partners to strive to assure the highest quality of individualized, developmentally supportive, family centered care for newborns and their families in intensive and special care nurseries. year ago, the first nidcap nursery certification was conferred on st. luke’s children’s hospital in idaho. and recently another certification has been achieved by children’s regional hospital, cooper university hospital in camden, new jersey, with the certification program’s official launch planned for 2010. the nfi and its members envision a day when nidcap represents the standard for the delivery of care in newborn intensive and special care nurseries around the world. the graphic above was designed by william rieser of the agency orange, as a commemorative poster to mark the evolution of the training centers and their directors and trainers over the past thirty years. 20 1 12 • 2010 • developmental observer bryden was the christmas present taryn and brent had wanted. however, shortly after he was born on december 18th, bryden began having difficulty breathing and was transferred to children’s hospital in oklahoma city for life saving medical care. as taryn reports, “my husband and i were very upset, after all this is not how it was supposed to be. we had no idea that the next weeks would be the worst of our lives.” cpr was required to sustain bryden en route to the newborn intensive care unit. upon arrival at children’s hospital, his condition worsened. “the first time we saw him he was in the surgery room and the nurse was bagging him in order to keep him alive. i left the room so that he could have the surgery to place him on the heart-lung bypass machine, and i just sank. i only thought that was as low as a person could feel.” during surgery, bryden’s heart stopped beating, and as he was resuscitated, he received a laceration to his liver and experienced massive bleeding. “when we got to see him after the surgery, the nurse told us to prepare ourselves. well, i am not sure that you can prepare yourself.” after receiving many blood transfusions bryden’s body was swollen and the incision in his chest and abdomen was open. taryn and brent stayed at his bedside all night. ultrasound pictures of bryden’s brain were taken the next morning which showed multiple strokes and bleeding in his brain. bryden was removed from the heart-lung bypass machine and his breathing efforts were supported by a ventilator. “…they explained to us that this was not likely to keep him alive. everyone got ready for the end.” for a third time, the priest was called to bryden’s bedside. “i remember my husband’s breaking point was when the priest was called into the room. he yelled out ‘get out now’ and then, after further reflection, he said to the priest, ‘i am sorry but you cannot be here.’” twenty to thirty medical staff and family were in the room when he was taken off the heart-lung machine; the room was silent. “my own personal fight for bryden’s life drove me. i guess inside i thought that if i fought as hard as i could it would somehow help him survive.” bryden did not die. he continued to slowly recover with assistance from his parents and the entire medical team. bryden’s parents went home for the first time in four days to be with their two older children. they explained bryden’s condition to his ten year old brother. “this was the hardest conversation that i have ever had to have. he cried on and off for weeks. it was nearly impossible for him to understand why he could lose his brother.” during the next six weeks, bryden began to breathe on his own and no longer needed the ventilator. “he had at least seven surgeries, and multiple blood transfusions. bryden experienced many challenges including feeding, regaining muscle strength, keeping his joints pliable, and stopping muscle contractures. sometimes i felt like we lost…and found our baby all in six weeks.” the andersons were supported by wanda felty, the family advocate with the oklahoma infant transition program (oitp) at oklahoma’s children’s hospital. wanda’s interaction with families under stress gives them a sense that someone understands what they are experiencing and that they are not alone. her support continues after infants are discharged as parents need her. as taryn reflects, “wanda is my right hand woman, my go to person. if i have any questions, she is the first person i call; she helps me in all aspects from how to weave through the system to simple pep-talks when i am having a down day.” as bryden got ready to go home, bunny hutson, rn, infant development specialist with oitp and the sooner nidcap training center, received a referral for a behavioral observation to help bryden’s parents understand his unique ways of expressing himself. as taryn reflects with bunny, “i remember being so scared when you did your evaluation and you talked about bathing bryden. after i talked to you, i knew that i was capable of taking care of him at home. you totally put me at peace with my decision to take bryden home and know that i was not doing him a disservice.” life for parents who have a baby in the newborn intensive care unit is daunting and uncomfortable at best, and may be fraught with repeated challenges, seemingly insurmountable hurdles, and terror when their baby is very sick. parents’ efforts to manage themselves, remain emotionally intact and available for their baby, interact with many medical staff, and make sense of ‘medical speak’ can be a huge and exhausting task. taryn and brent anderson and their son bryden are highlighted in this column. taryn shares her nicu story, speaking to the challenges her family faced, and how they dealt with those challenges. the anderson family continued on page 18 fa m i ly v o i c e s tracy price-johnson, ma developmental observer • 2010 • 13 s u p p o r t i n g fa m i l i e s post traumatic stress disorder in the nicu and beyond “the relatively high levels of psychological distress experienced by parents, coupled with the potential negative outcomes on the parent and infant, suggest that it is important to try to prepare parents, [whenever] possible, for the expected psychological reactions that may occur in the event of a nicu hospitalization and also to support parents during the transition to home care.” 1(p 136) “psychiatric help may be important for some parents, if they want it, and it should be widely available. but the fact is, for many of us, a “minor” medical issue in our surviving preemie really needs “major” attention because our children really “are” vulnerable.” 2 the two quotations above, one from a recent article published in psychosomatics1 and the other included in a commentary from helen harrison,2 a long-time advocate for nicu parents, both provide important words of wisdom. they also hint at the complexity of the issue of drawing on psychiatric diagnostic descriptors to conceptualize parental responses to the nicu experience. the article by shaw1 and colleagues, cited above, was widely reported in the general press,3 reminding us that it is important for nidcap practitioners to be aware of this work and how it might best be used. the idea that acute stress disorder (asd) and/or post-traumatic stress disorder (ptsd) may be appropriate diagnostic categories for parents with a baby in or graduated from the nicu is not new.4 however, parent advocates, as represented by harrison,2 note that it is important to avoid the potential error of labeling legitimate parental reactions to crisis, or observations of potentially significant problems, as part of a psychological reaction. how can developmental and medical professionals address both of these important and legitimate issues in their care of families? in evaluating this literature in terms of its value in our care of families of newborn intensive care infants and graduates, several issues need clarification. one of these issues is the distinction between asd and ptsd, which is described by shaw1 and colleagues as follows: “asd is thought to represent an early manifestation of the trauma response and is characterized by symptoms similar to those of ptsd. it has been shown that asd characteristics of dissociation (i.e., a sense of feeling disconnected from one’s body or usual sense of self ), startle reaction, fear or avoidance of the trauma, and social withdrawal are powerful predictors of subsequent ptsd symptoms.” (p 131) thus, the major difference between asd and ptsd is timing and persistence. the authors go on to report on responses reported by parents immediately after the birth of their infants, and again four months later. clearly, interpretations of these reports must take into account the likelihood that during the first reporting period, parents were in fact in the middle of a true crisis, and the possibility that four months later, many reality-based threats to the survival of their infants may still have been present. the question remains, for those working to support these parents, of what responses are in fact appropriate and expected in the face of daily stresses of a level unique in parental experience? what are the actual data on the frequency and severity of asd and ptsd as reported in the existing literature? the paper by holditch-davis4 and colleagues reported on data gathered in semi-structured interviews of 30 ethnically diverse, primarily married mothers when the infant was six months corrected age. this paper focused on the symptoms of re-experiencing past traumatic events, avoidance, and increased arousal. the authors found that all thirty mothers reported at least one symptom, twelve had two, and sixteen three, independent of the severity of the infant’s illness. the authors were careful to note that they were assessing specific symptoms, not diagnosing ptsd, and thus were not providing evidence about the actual incidence of ptsd as defined in the diagnostic and statistical manual of mental disorders-fourth edition-text revision.5 the paper by shaw1 and colleagues was based on extensive questionnaire data obtained from eighteen parents, both mothers and fathers, who were all married, primarily well-educated and higher-income; assisted reproduction played a role in many of the pregnancies. they had originally approached approximately 120 parents, of whom forty filled out the self-report shortly after birth, and the eighteen parents, who were the subjects of their paper, completed the four month follow-up. thus, as the authors note, the “representativeness” of this group may be of a significant concern. they found an initial rate of asd, according to the self-report, of thirty-three percent, all in mothers. at four months, fifty-nine percent of the parents (10 individuals) had elevated ptsd indicators, though only three parents met the most definitive diagnostic criteria. interestingly, the fathers’ distress appeared to increase over time, while the mothers reported symptoms decreased. later ptsd symptoms were associated more with early asd symptoms than with measures of the severity of the infant’s condition. keeping in mind the small and homogeneous nature of this sample, it is open for several interpretations. it actually is quite impressive that in a group with a mean length of hospital stay of almost fifty-six days, only nine percent of the melissa johnson, phd 14 • 2010 • developmental observer mothers at four months met the “likely diagnosis” criteria for ptsd. it is also interesting to note that beck depression inventory6 scores placed fourteen parents in the minimal, one in the mild, and one in the moderate range of depression (these scores reflect the severity of the depression, not the number of episodes). perhaps another indicator of the rather robust coping in a group of parents who had recently experienced a tremendous reality stress. neither of the above papers included a control group, making an article by vanderbilt7 and colleagues of special interest. this research evaluated “the prevalence of acute posttraumatic stress symptoms among low-income mothers of infants admitted to the nicu compared with similar mothers with infants in the well baby nursery (wbn)”7(p 50) in a much larger sample size of fifty-nine mothers caring for their infants on the nicu and sixty mothers caring for their infants on the wbn. the researchers used several questionnaires, administered in person by a registered nurse, within a few days of the birth of the infant. only about a third of the mothers were married, most were members of ethnic minorities, and over eighty percent were covered by public insurance. in this group of mothers who were experiencing both social stresses and the birth of a newborn, twenty-four percent of the mothers caring for their infants on the nicu and three percent of the mothers caring for their infants on the wbn “met screening criteria on the perinatal posttraumatic stress disorder questionnaire8 for risk of a diagnosis of acute stress disorder.”7 (p 53) as the data was collected while the mothers were essentially in the throes of the crisis/trauma experience, it is difficult to compare them to data collected months afterward, and especially to consider responses as “posttraumatic” when the trauma was still very much active. yet, it is very interesting to note the similarity in the frequency of asd symptoms reported in the two groups of mothers caring for their infants in the nicu, whose other life experiences were so very different. again, one is struck by the resilience evidenced by 76% of the mothers of babies in the nicu, with limited social and economic resources, not meeting criteria for asd, and also by the generosity of the mothers; of the seventy-six mothers caring for their infants in the nicu, only ten refused to be interviewed (with seven found ineligible). what do these complex data suggest for clinicians? should we be suggesting psychiatric support for parents who meet specific criteria, educate all parents about the risk of ptsd, or neither? helen harrison2 cautions us that if we offer psychiatric services, we need to “consider the damage you may be inadvertently inflicting by implying that the mothers have psychological disorders that they are somehow imposing on their children.” harrison2 suggests: advocating for excellent medical care for the sequelae of prematurity, high-quality respite, parent-to-parent support, and improved education about the aftermath of prematurity. vanderbilt7 and colleagues suggest that screening for both postpartum depression and acute posttraumatic stress symptoms may be valuable (some states, such as new jersey, have mandates for post partum depression screening), and they note that nidcap is one approach that has been found effective in reducing family stress and enhancing maternal function. holditch-davis4 and colleagues advocate that nurses and other health providers provide support and education around these issues, and note that “education about normative reactions to the trauma of having a sick infant in the nicu could be useful for many nicu families. opportunities to enhance maternal feelings of self-efficacy, such as partnering in providing care to her infant in the nicu, might counter feelings of helplessness and use of avoidance.”(p 169) they also suggest early identification and referral of mothers with ptsd symptoms, as do shaw1 and associates. based on their failure to find an association of ptsd symptoms with infant medical variables, shaw and colleagues also suggest that “treatment interventions that target parental psychological variables may have the potential to limit the development of future trauma symptoms;”(p 135) advice that should be considered in the context of the caveats raised by harrison.2 in summary, the research discussed above, as well as other studies in the literature, vary along dimensions of time, social factors, parental gender, method of data collection, and many other factors. the research suggests that acute and chronic traumatic stress is an important issue for a significant minority of parents, and yet also points out the strength and resilience that many parents demonstrate in the face of overwhelming experiences. it challenges us to provide a range of choices for support services, including, though not limited to formal psychiatric and psychological therapies, and also to remember to listen carefully to what each parent has to tell us about their own experience and the experience of their infant. references: 1. shaw, rj, bernard, rs, deblois, t, ikuta, lm, ginzburg, k & koopman, c. the relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. psychosomatics. 2009; 50(2): 131-137. 2. harrison, h. e-mail communication used by permission, august 26, 2009. 3. tarkan, l. for parents, on nicu, trauma may last. the new york times on line. 2009; august 24. 4. holditch-davis, d, bartlett, tr, blickman, al & miles, sm. posttraumatic stress symptoms in mothers of premature infants. journal of obstetric, gynecological, and neonatal nursing. 2003; 32(2): 161-171. 5. american psychiatric association. diagnostic and statistical manual of mental disordersfourth edition-text revision. washington, dc: american psychiatric association, 2000. 6. beck, at, steer, ra & brown, gk. manual for the beck depression inventory-ii. san antonio, tx: psychological corporation, 1996. 7. vanderbilt, d, bushley t, young r & frank da. acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit: a preliminary study. journal of developmental and behavioral pediatrics. 2009; 30(1): 50-56. 8. demier, rl, hynan, mt, hatfield, rf, varner, mw, harris, hb & maniello, rl. a measurement model of perinatal stressors: identifying risk for postnatal emotional distress in mothers of high-risk infants. journal of clinical psychology. 2000; 56:89-100. developmental observer • 2010 • 15 this column provides our readers with current information regarding resources of interest. articles als h. nidcap: testing the effectiveness of a relationship-based comprehensive intervention. pediatrics. 2009; 124(4): 1208-1210. cong x, ludington-hoe sm, mccain g, & fu p. kangaroo care modifies preterm infant heart rate variability in response to heel stick pain: pilot study. early human development. 2009; 85(9): 561-567. delobel-ayoub m, arnaud c, whitekoning m, casper c, pierrat v, garel m, burguet a, roze jc, matis j, picaud jc, kaminski m, & larroque b. behavioral problems and cognitive performance at 5 years of age after very preterm birth: the epigage study. pediatrics. 2009; 123(6): 1485-1492. gargus ra, vohr br, tyson je, high p, higgins rd, wrage la, & poole k. unimpaired outcomes for extremely low birth weight infants at 18 to 22 months. pediatrics. 2009; 124(1): 112-121. glorieuz i, montiaux n, & casper c. nidcap: definition, practical aspects, published data. archives de pediatrie [french]. 2009; 16(6): 827-829. greisen g, mirante n, haumont d, pierrat v, pallas-alonso cr, warren i, smit bj, westrup b, sizun j, maraschini a, & cuttini m. parents, siblings and grandparents in the neonatal intensive care unit: a survey of policies in eight european countries. acta paediatrica. 2009; 98(11): 1744-1750. hamilton ke & redshaw me. developmental care in the uk: a developing initiative. acta paediatrica. 2009; 98(11): 1738-1743. hartling l, shaik ms, tjosvold l, leicht r, liang y, & kumar m. music for medical indications in the neonatal period: a systematic review of randomized controlled trials. archives of disease in childhood fetal and neonatal edition. 2009; 94(5): f349-f354. maguire cm, walther fj, sprij aj, le cessie s, wit jm, & veen s. effects of individualized developmental care in a randomized trial of preterm infants < 32 weeks. pediatrics. 2009; 124(4): 1021-1030. morse sb, zheng h, tang y, & roth j. early school-age outcomes of late preterm infants. pediatrics. 2009; 123(4): e622-629. ohlsson a. nidcap: new controversial evidence for its effectiveness. pediatrics. 2009; 124(4): 1213-1215. peters kl, rosychuk rj, hendson l, cote jj, mcpherson c, & tyebkhan jm. improvement of short-and long-term outcomes for very low birth weight infants: edmonton nidcap trial. pediatrics. 2009; 124(4): 1009-1020. ratynski n, jouquan j, & sizun j. strategies for the nidcap implementation. archives de pediatrie [french]. 2009; 16(6): 830-832. silberstein d, feldman r, gardner jm, karmel bz, kuint j, & geva r. the mother-infant feeding relationship across the first year and the development of feeding difficulties in low-risk premature infants. infancy. 2009; 14(5): 501-525. ullenhag a, persson k, & nyqvist kh. motor performance in very preterm infants before and after implementation of the newborn individualized developmental care and assessment programme in a neonatal intensive care unit. acta paediatrica. 2009; 98(6): 947-952. books/dvd ndc: neonatal developmental care this recently revised, self-paced program is designed to promote introductory understanding of developmental care and application to nicu practice (www. neonataldevelopmentalcare.com). an interdisciplinary team, led by terri daniels, med, and affiliated with the institute for disability studies at the university of southern mississippi, forrest general hospital, and southern mississippi neonatology developed the program. updates include the new dvd format, expanded reference lists, updated content, additional photos and videos, a new segment regarding supporting newborns during intubation following delivery, and was recently reviewed in the developmental observer, 2009; 3(1):15-16. internet the hera project this multidisciplinary initiative created for parents and care providers of prematurely born infants includes 43 hospitals throughout spain and is extending into the community. the program serves to foster optimal development through advancing family centered, individualized developmental care. for information please visit www.proyectohera.com/in_index.html. 99nicu this website, founded by staff at the karolinska university hospital in stockholm, sweden, provides a forum to explore and discuss newborn care and resources. for information please visit www.99nicu.org. the european foundation for the care of newborn infants created by health care professionals and scientists from across europe, this internet site strives to combine the strengths of parents and professionals and facilitate mutual understanding by enhancing public awareness, supporting research and training, and encouraging discussion. for information please visit www.efcni.org. d e v e l o p m e n ta l r e s o u r c e s diane ballweg, msn, rnc, ccns we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to diane ballweg at: developmentalobserver @nidcap.org. 16 • 2010 • developmental observer research review: fathers of preterm infants understanding and supporting parents through the difficult, and usually unexpected, journey of becoming mothers and fathers in a newborn intensive care nursery is an important part of our work. much has been written about the mothers of preterm infants, however, there is relatively little that specifically addresses fathers’ experiences. most studies have used qualitative methods based on interviews and, although limited by small sample sizes, they reveal interesting insights into fathers’experiences, and provide ideas for support tailored to their needs. the interview method in and of itself can be a positive experience for fathers. pohlman1 reported that a series of interviews conducted over several months built a strong rapport that supported fathers to become comfortable discussing their feelings candidly. arockiasamy2 and colleagues offered fathers a choice of a male or female physician or a female therapist. all the fathers chose the male physician and reported that they found the interviews beneficial, suggesting that men may prefer to get their information and support from male members of the care team. others have reported that fathers may feel like outsiders in the “feminine” environment of the newborn intensive care unit.3 family centered practice and policy varies from country to country, and unit to unit.4 swedish researchers3,5 describe generous paternity leave, and financial compensation when a father needs to take time off work to look after a sick child. in contrast, none of the fathers interviewed in the american midwest1 had any paternity leave benefits and they were also often put under financial pressure by the cost of medical care; it is not surprising that “work” was the primary topic in their conversations with the interviewer. other cultural and environmental factors that could have an impact on fathers such as family participation policies, space to be present in the newborn unit, and implementation of developmental care, are not described in relation to fathers’ experience. however a study in the netherlands6 looked at mothers’ and fathers’ stress in the context of a randomized trial of nidcap and did find some evidence that fathers who participated in nidcap care appeared to be less stressed than those that did not. perhaps this was because of the fathers’ increased involvement with their infants care in the nidcap group. loss of control is a common theme in interviews with fathers and provides a context for other themes.2 fathers may have to juggle multiple roles at this time including being overseers, fathers, husbands, primary wage earners, and protectors. fathers for whom work is the primary method of contributing to support of the family report that they feel in control. however, these fathers may lose out on information, creating a need to monitor the infant’s progress more carefully, by adopting high levels of vigilance and the monitoring of staff actions.2 fathers seem to invest much energy in observing the staff3 in their efforts to achieve some sense of control. some fathers feel so stressed by the loss of control that they have to remove themselves from the situation.2 fathers find that information is important for their sense of control and they value communication with health care professionals who treat them as equals.2 pohlman1 describes fathers’ feelings of being demoted in the newborn unit compared to feelings of competence and control at work. not all fathers require the same amount of information (it may be helpful to ask them if they would prefer detailed information or an overview). however, consistency is important, as is the communication style of professionals.1,2 fathers’ initial concerns appear to be mostly for the mother’s wellbeing, more so than needing to be involved with the infant’s caregiving.1,2,3 providing opportunities for the father to concentrate on his partner’s needs may be one way to help him establish a sense of control.3 providing timely information helps fathers to focus on their infant. their sense of being a father is strengthened once they have more contact with their infant, whether this be eye contact or physical holding.2,3 providing information and guidance on how father-infant interaction can promote the infant’s development may be helpful.2 although there are many common themes in these studies there are also wide variations in fathers’ experiences and reactions.2 some fathers use external activities such as exercise or religion as coping strategies, some find work a comfort, while others find it overwhelming. some fathers prefer to depend on their own resources or their partner while others appear to seek strength from friends, family and health care professionals. interestingly they do not seem to view contact with other parents on the newborn unit or fathers’ groups as particularly beneficial.2 fathers’ stressors and reactions appear to be different to those of mothers. mothers of preterm infants are likely to report more symptoms of acute stress disorder than fathers during the infant’s sojourn in the newborn unit. however four months after the birth, fathers have been reported to be more vulnerable to post traumatic stress disorder; with thirty-three percent reporting symptoms compared to nine percent of mothers.7 severity of symptoms does not appear to correlate with severity of the infant’s illness or length of hospital stay.7 perhaps fathers’ energies are so directed toward being guardians of their family that they have no time to deal with their own feelings and this catches up with them once the crisis has passed. sensitivity to the fathers’ protective role3 may ameliorate their experiences of stress and perhaps prepare them for potential psychological after effects of becoming the father of a preterm infant.7 references on page 18 c u r r e n t d e v e l o p m e n ta l r e s e a r c h inga warren, dip cot, msc developmental observer • 2010 • 17 newborn intensive care units in our country of israel are not defined as such by our health system, but rather as units for the special care of the newborn. they are not officially considered as intensive care, in spite of their providing care to extremely premature, sick and complex infants. they are hence staffed and financed accordingly. a direct consequence of this fact is our nurse to infant ratio, probably one of the poorest among developed countries. i am not especially interested, nor skilled, in ratios, numbers and policy making. i just know that it is an all too common situation, in my unit, for a single nurse with no other auxiliary professional around, to take care of four to five intensive and intermediate care infants, some of whom might be on ventilator or cpap; some of whom might be post-operative. complex infants, by all standards. in the minimal care area of our unit, a single nurse usually takes care of eight to ten stable growing babies. no doubt, we nurses here are capable of managing huge masses of work. in our milieu, complex and stable are terms mostly used and understood strictly by their medical connotations. superimposed on these already quantitatively overwhelming medical, biological and technical complexities, there is a whole constellation of parental, social, developmental and psychological needs to be addressed and taken care of, at least in part, by the assigned nurse. our unit’s circumstances are not different, in this regard, from others across the whole country. it is just that we embraced, purposely and reflectively, a neurodevelopmental approach to care a few years ago, even amidst the harsh reality described above. we had the dream, courage and generosity to envision that such an approach was possible for the babies and families we take care of. we made certain to gather sound, up to date knowledge to guide our actions and to situate us as valid interlocutors in the “developmental dialogue” taking place internationally. we studied, changed, implemented, made enormous steps forward. we improved ourselves as health care professionals and as human beings in a mesh of never ending relationships. yet, i wonder today if we are lacking the astuteness and creativity to make further and bigger steps forward. is staffing a real and crucial element in developmental care and nidcap promotion within a unit? should we let staffing difficulties become a major barrier in our efforts to provide a type of care that is more attuned to infants’ and parents’ needs? is the nidcap approach plausible only for units which have conquered other basic and essential needs? in trying to face this conflict two different lines of thought come to my mind. the first is my conviction that when i give hands-on care, the moment i enter that infant’s incubator, it is – as in a love crush – only between him/her and me; i must make every effort to bring myself to believe that for those even brief moments (because i am, after all, a 1:5 ratio nurse) the world outside can wait. i will take care of you as gently and contingently as i know and can. the second is my belief that professionals working under conditions similar to the ones i have succinctly described, should find creative and efficient pathways to more actively and purposely involve parents in care. in units with staffing circumstances as ours, parent advocacy for and involvement with their infant’s care should not be an approach, a luxury, nor a wished goal. it is a first necessity. the professionalism, eagerness and creativeness of the nidcap community worldwide can make a significant contribution in transforming these and additional lines of thought into viable strategies to support endeavors to overcome staffing difficulties as well as other barriers to sensitive preterm infant care. we can strengthen each other and assist others not to desist from the dream of a more professional, updated and humane care for preterm infants and their families. dalia silberstein, rn, phd nicumeir hospital kfar saba israel l e t t e r s t o t h e e d i t o r s from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org. developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor sandra kosta, ba associate editor gretchen lawhon, rn, phd associate editor a [personal] view from the east 18 • 2010 • developmental observer the growth of nfi membership continued from page 3 fa m i ly v o i c e s continued from page 12 the nidcap certified infant development specialist in the nicu provides essential support for families who strive to understand their infant. the behavioral observation, which interprets the infant’s behavior and responses to the lived nicu experience, environment, and caregiving interaction, opens the door to a deeper understanding and promotes the emerging relationship between the infant and family. parents become more confident in their parenting role when their own observations and understanding of their baby are confirmed and supported. suggestions for caregiving, made in collaboration with the parents, provide additional support to the parents’ self-assurance as well as strengthen the infant’s care during the infant’s hospitalization and as they prepare to take their infant home. with the help and support of the oklahoma infant transition program (oitp) and the sooner nidcap training center at children’s hospital, family centered care continues after discharge. the oitp staff meets the family in the hospital and continues to provide services to them when their child is transitioned home. oitp is one of the few programs in the nation that has a paid family advocate position. this position is held by a parent who has lived the nicu experience and has navigated the service system and community supports. the interaction that the oitp family advocate has with families offers them hope for the future. bryden went home with his parents on january 22nd; his parents often return to the nicu to visit those who cared for him. as taryn reports, “everyone else in the world looks at him as if he is his magnetic resonance image (i.e., brain image). our nicu family sees what he has come from and says, ‘you know what? we all know what he is supposed to be and do but look what he has already done. only god knows what he will accomplish.” bryden’s family works together and with the community to help him achieve his goals. “as long as bryden is fighting, we as a family are fighting for him. we have a very different normal to our life now,” said taryn. “we have different passions for rehabilitation and unconditional love.” article contributors: taryn anderson, bunny hutson, rn, wanda felty, oitp family advocate, and laurie mouradian, scd, otr/l. references: 1. pohlman s. the primacy of work and fathers of preterm infants: findings from an interpretive phenomenological study. advanced neonatal care. 2005; 5(4):204-216. 2. arockiasamy v, holsti l, & albersheim s. fathers’ experiences in the neonatal intensive care unit: a search for control. pediatrics. 2008; 121 (2): e215-e222. 3. lundqvist p, westas lh, hallstrom i. from distance toward proximity: fathers lived experience of caring for their preterm infants. journal of pediatric nursing. 2007; 22(6):490-497. 4. greisen g, mirante n, haumont d, pierrat v, pallas-alonso cr, warren i, westrup b, sizun j, maraschini a, & cuttini m. for the esf network, parents, siblings and grandparents in the neonatal intensive care unit. a survey of policies in eight european countries. acta paediatrica. 2009. 5. jackson k, ternestedt bm, & schollin j. from alienation to familiarity: experiences of mothers and fathers of preterm infants. journal of advanced nursing. 2003; 43(2):120-9. 6. van der pal sm, maguire cm, le cessie s, wit jm, walther fj, & bruil j. parental experiences during the first period at the neonatal unit after two developmental care interventions. acta paediatrica. 2007; 96(11):1611-6. 7. shaw rj, bernard rs, deblois t, ikuta lm, ginzburg k, & koopman c. the relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. psychosomatics. 2009; 50(2):131-137. generous spirit, wonderfully gentle guidance and a long career in support ing babies and their families and supporting other professionals to do so as well. honorary member kathrine leigh peters, phd, rn became the first honorary member of the nfi this past october at the board of directors’ meeting in chicago. she is the lead author and a guiding light for the recently published nidcap study: “improvement of shortand long-term outcomes for very low birth weight infants: edmonton nidcap trial.”3 her published work and research in supporting infants during necessary medical/nursing procedures has been long-standing, and she has been recognized as a leader in nursing with multiple awards since the mid-1990’s. the nfi’s growth continues. as of november 1, 2009 there were 158 members on the roster: one hundred and eighteen professional members, thirty student members, five family members, four emeritus members, and one honorary member. one of the goals of the nfi is the creation of a standard for developmental care leaders in nurseries worldwide as well as supporting the growing number of professionals who are nidcap certified. in october 2009 the nfi board announced that, as a part of training, all new nidcap trainees must become student members, and that all newly certified nidcap professionals must become professional members of the nfi. the nfi welcomes them all and continues to invite those formerly trained to join our organization. for a complete description of the nfi membership and its categories discussed above, please visit the nidcap website at: www.nidcap.org. references: 1. brazelton tb & nugent jk. neonatal behavioral assessment scale, 3rd edition. london: mac keith press, 1995. 2. als h. guidelines for advanced praticum: following an infant and family from admission to discharge and transition to home. boston, ma: nidcap federation international, inc, 2006. 3. peters kl, rosychuk rj, hendson l, conte jj, mcpherson c, & tyebkhan jm. improvement of shortand long-term outcomes for very low birth weight infants: edmonton nidcap trial. pediatrics. 2009; 124:1009-1020. c u r r e n t d e v e l o p m e n ta l r e s e a r c h continued from page 16 developmental observer • 2010 • 19 s everal years ago, the newborn intensive care nursery at the children’s regional hospital at cooper university hospital in camden, new jersey accepted the opportunity to be a pilot site for the nidcap nursery certification program. in the beginning, we entered this process in order to provide the nfi with the experience of working with a nursery that would likely require remedial work in order to attain certification. from the nfi’s perspective, cooper represented a nicu with a diverse population within an academic setting in an economically challenged city. from cooper’s perspective, this opportunity to go through the certification experience within the structure and support of the pilot process was a chance of a lifetime regardless of the less than optimal timing. lest you think that this is the beginning of cooper’s journey let me set the record straight. in 1994, sonia imaizumi, md came to cooper and discussed the nidcap program with her new colleague gary stahl, md and within a year the mid-atlantic nidcap center was established (1995) under the direction of deana demare, pt. cooper’s nicu has been committed to the provision of nidcap care for the past fifteen years. this philosophy of care would not be possible without the full support of both the nursing and physician leadership which began with charlotte tobiason, rn and frank briglia, md. over the years our nicu has continued to strive toward excellence in practice and to demonstrate the implementation of the nidcap philosophy of care through multidisciplinary collaborative care. as with many examples in life it turns out that the process is in many ways more important than the outcome due to the power of relationships. this was very evident at cooper during our thorough site self assessment utilizing the nearly 120 five point descriptive nidcap nursery certification criterion scales (nnccs). to enlist the participation of as many individuals as possible, the decision to participate in the nidcap nursery certification program had been made by the nicu clinical council. a small multidisciplinary group then met to assign various portions of the site assessment with the charge to go into the unit on both day and night shifts and facilitate the staff in coming to consensus on each of the nnccs descriptive ratings. there were many very heart warming stories brought up in the small staff group 2010 vol. 4 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap federation international discovering collaborative pleasure and pride through the nidcap nursery certification process gretchen lawhon, rn, phd continued on page 2 table of contentsdiscovering collaborative pleasure and pride through the nidcap nursery certification process ................................ 1 the growth of nfi membership ............. 3 nidcap training centers from around the world ...................................... 4 a message from the director of the nidcap nursery certification program ... 6 nidcap profile .......................................... 8 2009 marks major milestones for nidcap ..................................................... 10 family voices ........................................... 12 supporting families ................................ 13 developmental resources .................... 15 current developmental research ........ 16 letters to the editors .............................. 17 “when work, commitment, and pleasure all become one and you reach that deep well where passion lives, nothing is impossible.” nancy coey subscribe today! developmental observer nidcap federation international board of directors and staff we invite you to subscribe by going to www.nidcap.org and selecting subscribe on the nfi website. subscription period: 1 year ($15) 2 years ($25) 3 years ($35) the official newsletter of the nidcap® federation international president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens.harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu tracy price-johnson, ma faculty at ucdhsc and the family centered care consultant at the children’s hospital in colorado email: price-johnson.tracy@tchden.org roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr karen m. smith, rnc, med nidcap senior trainer co-director, st. luke’s nidcap training center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu victoria youcha, edd child development specialist children’s medical associates alexandria, va email: vyoucha@gmail.com david wahl executive director email: nfidirector@nidcap.org rodd hedlund, med director nidcap nursery certification program email: nncpdirector@nidcap.org nidcap federation international (nfi) www.nidcap.org national nidcap training center children’s hospital boston and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: roger sheldon, md co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: browne.joy@tchden.org st. luke’s nidcap training center st. luke’s regional medical center boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, med email:smithk@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey, usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie gustafsson, rn, bsn email: nidcap@karolinska.se connecticut children’s nidcap training center connecticut children’s hartford, connecticut, usa co-director: ann milanese, md co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk university of illinois medical center at chicago nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: patricia g. bondurant, mn, rn, cns contacts: tammy casper msn, med, rn or linda lacina, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org/become.html. by order of establishment n i d c a p t r a i n i n g c e n t e r s 4 • 2019 • developmental observer column editor – debra paul, otr/l #everyhourstronger having a baby in the neonatal intensive care unit (nicu) is a heart-wrenching, anxiety-inducing, and challenging experience. no family wants to have a less-than-perfect baby at birth, and yet every day, babies are born prematurely or with other health complications who need additional intensive care. when this happens, parents find themselves visiting their newborns in the nicu instead of taking them home to the nursery room that they so lovingly decorated and prepared for their baby. amanda shares her personal journey – from the moment she was rushed to the hospital, to the emptiness she felt when her baby was whisked away after being born, to the unpredictability of having a son with special healthcare needs. but through it all she has learned that she is stronger and more brave than she ever thought possible. and so is her son. “congratulations and i am so sorry.” these were the first words my friend and fellow mom of a micro preemie said to me after my son was born and they are so true. the journey into parenthood is challenging, and when the journey begins with the nicu, it is terrifying. at 3 a.m. on the first day of my 26th week of pregnancy, i woke up bleeding with what we later learned was a placental abruption. my husband and i rushed to the hospital where we were told i was in preterm labor. my only thought was, “i can’t be in labor. we don’t even have a car seat.” i was in disbelief, and it was surreal to see the doctors and nurses rushing around while i was still trying to figure out what was happening. ivs were placed, magnesium was started as a neuroprotectant, steroid shots were given to help with lung development, and the nicu team came to speak with us. they told us about the different organ systems that would be monitored after our son was born and what were possible complications. my only question was, “what is the chance he will live?” as a child psychologist working at the time in a rehabilitation department for children with various types of brain injury, i knew too many stories of children born prematurely and with medical complications. my mind flooded with worst case scenarios. fear swept over me. this could not be happening. once magnesium was started, my labor slowed and i spent four days in the hospital, always within “6 hours of delivery.” the nicu team visited several times to answer questions as my husband and i adjusted our expectations of birth. we were going to have a micro preemie. i kept reminding myself that every hour i stayed pregnant gave him just a bit more time to get stronger, and it kept me going. i did a few “bucket list” items like having my husband read a story to my belly. when my body and my son’s body could hold on no longer, i had an emergency c-section. my husband was with me at his birth; i heard my son cry and then he was whisked off to the nicu with my husband close behind, and i was alone. i went to the recovery room and then learned how to pump. four hours later, they wheeled my bed to the nicu where i saw my son for the first time. he was intubated, under blue lights, so tiny, and the most beautiful (slightly alien-looking) child i had ever seen. the first week of the nicu went well. preemies are born with a valve in the heart that hasn’t closed yet called a pda (patent ductus arteriosus) and my son’s closed after receiving medication. he was weaning down on breathing support at a steady pace and we felt hopeful we would have an uneventful nicu stay and were amazed at the strength in that 2lb 10 oz child fighting to live. we helped with diaper changes and our son’s first “bath.” we prioritized bonding and self-care. my husband made sure we amanda and kayden fa m i ly v o i c e s developmental observer • 2019 • 5 slept at home and left the hospital. all the monitor beeping in a nicu can become overwhelming at times. we learned about bradycardia episodes and how to help when they happened. we held our son for the first time three days after his birth. we wouldn’t hold him again for two more weeks because the rollercoaster was about to take a turn. our son seemed sick. he was more lethargic, he needed more breathing support, and his condition was less stable. this means more alarms going off and more intense looks from staff. my son had a blood infection that began a chain reaction of terrifying moments. the pda in his heart reopened, he was too sick for surgery to close, and too sick to be held. we comforted him through the holes in his incubator. he was reintubated and put on an oscillating ventilator. our son had a spontaneous intestinal perforation and had to be transported with the flight for life team to a higher level of care nicu where he could be monitored by a surgery team. the hospital he was transferred to was the hospital where i worked. we watched our son struggle for his life two floors under my office. we watched nurses “chase” his blood pressure all day. we watched him need resuscitation several times. we watched helplessly as he fought to hold onto life. i pleaded, “i just want him to live.” with medication and a skilled nicu staff, we saw our son recover from his blood infection, make it through heart surgery, heal from his intestinal perforation without surgery, and come off intubation. although the rollercoaster did not end there, the scariest turn was over. the late-night emergency calls from the hospital continued because of his underdeveloped lungs and the difficulties he had learning how to breathe with less support. as the days dragged on, we were surrounded by family, friends, texts, meals, and love. i returned to work at the hospital after my 8 weeks to heal from the c-section and visited my son every day. i was grateful to be near him and came down to visit during the day and to pump. my husband and i became experts at giving our son a bath and changing diapers while navigating cords and breathing tubes. we learned how to comfort him during diaper changes and medical procedures and flooded him with love during kangaroo time. our son had a hard time tolerating kangaroo time very long because of his breathing, so we found lots of way to let him know he was loved. we visited him every day and checked in every night until he was ready to come home, 105 days after his birth. as we prepared to go home, my husband and i encountered changed expectations for what home would look like. we learned that breastfeeding would not be his feeding plan because he needed supplemented nutrition and that we would be going home with oxygen and numerous medications. we learned infant cpr. we learned we could not put our son in daycare. we learned we would need to limit visitors and practice good hand hygiene, all the time. we learned our current lifestyle and the ideas we had about life with a baby were not a match for what our son needed. we began to make changes to support this new path. the journey that started our son’s life has continued to be a rollercoaster. he has needed multiple surgeries since his discharge and has had additional readmissions to the hospital, including one more icu stay. our son has broken a bone, sprained his ankle, needed glasses, and used supplemental oxygen for 18 months. i often say our son has had a lifetime in two years. he continues to need a daily inhaler to help him breath. he has attended and still attends physical therapy, occupational therapy, developmental services, numerous doctor’s appointments, and specialty visits. we have missed family outings and have stayed in our home during two respiratory seasons to keep him healthy. we have become experts in changing oxygen tanks, monitoring a pulse-ox, and checking for signs of respiratory distress. we have experienced first hand the impact of medical trauma on ourselves, our marriage, and our family. we have learned to look at the world differently. we have learned to be our son’s guide and support through the hard times. we have learned how little we can actually control. and, as the scary moments become less frequent and less intense, we have learned that nicu families are brave, that we are brave, and that we will always be #everyhourstronger. kayden is now two and a half years old. amanda n’zi, phd is a licensed child psychologist. she works in private practice in denver, co. #everyhourstronger kayden aged 4 days with parent’s enfolding him 2017 vol. 10 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “when we try to pick out anything by itself, we find it hitched to everything else in the universe.” john muir message from the nfi president our founder and first president, heidelise als, phd, realized the importance of incorporating a solid theoretical framework supported by scientific evidence into a newborn intensive care nursery (nicn) care approach. she also recognized and worked to develop an accompanying educational training program. every year, more nicn professionals and nurseries adopt this evidence-based best practice framework. in 1990, a small group of nidcap developmentalists gathered in washington, dc and started the tradition of trainers and supporters coming together annually for education and support. in 2001, our group was formalized and therefore further strengthened by the formation of the nidcap federation international. the work of the board of directors of the nidcap federation international, like the nidcap program itself, is dynamic, continuously responsive to the changing needs of our members and the infants and families we serve. in 2016, i assumed the role of president of the nfi board of directors. striving to articulate and support our evolving vision while expanding the work of my predecessors is my task and my privilege. i will work to direct my efforts during my term in office on the organization’s needs in areas where i feel i can best contribute. my own nidcap journey has included being a nidcap and apib trainer and a collaborator and most recently as a champion for our organization’s advancement. i have focused on raising global awareness and positioning the nfi for increased outreach, engagement and financial resources. being the president of the nfi holds a new set of responsibilities for me. these responsibilities will be guided by the vision from our most recent 2015 strategic plan, where we “envision a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship-based, familyintegrated approach.” as we grow and adapt to serve ever more newborns and their families around the world, we face many challenges which, of course, also become our opportunities. my goal is to support those which are key: (1) to raise global awareness for nidcap to advance its reach and support its growth; (2) to support education and training especially in parts of the world where nidcap is underutilized; (3) to build on scientific evidence and understandings; and (4) to provide support, mentorship and cohesiveness within our organization and membership. how we will strive to realize our organizational next steps is through our greatest resource… the people who make up our organization. drawing from the talents, creativity and energies of our group, we are forming several new councils and task forces to: continued on page 2 table of contents message from the nfi president .......... 1 abstracts .................................................... 4 nidcap care in the moment ............... 10 meetings and conferences .................... 18 nidcap on the web ................................ 20 abstract edition deborah buehler, phd, nfi board of directors president http://nidcap.org/wp-content/uploads/2014/05/june-2015-approved-nfi-strategic-plan.pdf http://nidcap.org/wp-content/uploads/2014/05/june-2015-approved-nfi-strategic-plan.pdf 2 • 2017 • developmental observer • build a nidcap nursery assessment and certification program foundational educational program, including use of e-learning strategies; • consider ways to develop reflective consultation and support for trainers; • examine from a global perspective, potential partnerships with organizations with shared goals; • strategize ways to revitalize nidcap in the united states; • create resources for nidcap scientific research development; and • develop corporate partnerships to bring financial resources into the nfi. these are just a few of the ideas that our membership and leadership have identified for our current focus, with more to follow as our capacities and needs evolve. members are welcome to reach out to share ideas and potential availabilities to participate in ongoing efforts. there is tremendous complexity in the world in which we live and work. our model and training program are incredibly beneficial and valuable. we have a responsibility to ensure that both aspects adapt to stay relevant and useful for generations to come. how we uphold the quality, integrity and dynamic nature of nidcap will determine the nfi’s future and success in “changing the future for newborns and their families.” nidcap trainers meeting abstract edition dear readers, welcome to the second abstract edition of the developmental observer. in this edition, we have published nine abstracts that were shared with the participants at the 27th annual nidcap trainers meeting in bologna, italy, hosted by the italian modena nidcap training center, october 26-29, 2016. all past (2007-present) and future editions of the developmental observer, will be archived at the iuscholar works, indiana university (iu). iuscholarworks is supported by the iu libraries and the iu digital library program, a collaborative effort of the iu libraries and university information technology services. please enjoy reading this first abstract edition of the developmental observer. developmentally yours, the editors developmental observer a semi-annual publication of the nidcap federation international ©2017. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd e. hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer participants from our 27th annual nidcap trainers meeting (october 26-29, 2016) in bologna, italy developmental observer • 2017 • 3 the noisy nicu: a quality improvement project to target noise reduction leonora hendson1 and danielle m. smith2 for the neonatal age appropriate care committee. 1 department of pediatrics, university of calgary. 2 foothills medical centre, alberta health services, alberta, canada. contact: leonora.hendson@ahs.ca or (1) 403-956-1587. key words: noise, premature infant, environmental health, developmental care, quality improvement background the human auditory system is unique in its capacity to receive, interpret, discern and respond to complex language, music, and sound. the auditory environment for the fetus is initially low frequency, transmitted, predictable, and expected. in contrast, in the newborn intensive care nursery (nicn), the preterm infant is exposed to environmental noise generated by ventilators, infusion pumps, fans, telephones, pagers, and alarms. exposure to these noises includes a broad spectrum of frequency and unpredictability, and competes with natural human (mother/ father) sounds. excessive or inappropriate noise in the nicn may have impact on physiologic stability, sleep, language and development, and attention and auditory processing.1,2 acoustic environment standards have been established and recommended for the nicn.3,4 research objectives the aims of this project were: 1. to create a culture change to a more sound sensitive environment through education and implementation of a quiet time. 2. to decrease noise levels by 1-2db from the baseline with the above interventions. figure 1. educational initiatives to parents and staff to increase awareness of appropriate noise levels included a flyer for parents, posted signage, and theme of the week. 4 • 2017 • developmental observer methods at baseline, we measured noise levels at a 37 bed level ii/iii open bay nicn using four soundear ii noise warning signs with internal data logging capability. we conducted a multidisciplinary staff survey about noise levels in the nicn and about awareness of an existing noise clinical practice guideline (cpg). thereafter, we had a month long sound awareness/education campaign using a variety of tools (teaching rounds, pod talks, posters, theme of the week, buttons, flyers, and brochures) targeting all nicn staff and parents in the nicu (figure 1). halfway through the education campaign, a twice daily quiet time was implemented. the quiet times were based on peak noise levels from the baseline measurements. approximately four weeks after the education campaign and implementation of the quiet time, we repeated noise measurements and sought staff feedback through a survey. results at baseline, our nicu exceeded hourly noise equivalent (leq) of 45 db 100% of the time (figure 2). the baseline staff survey revealed that 97% of the staff think our nicn is noisy; 98% think noise affects the babies in some way; 88% are adversely affected by noise levels themselves; and 69% were aware of the noise cpg. after the education program and implementation of the quiet times, the unit average improved by 0.65 db (figure 2). pod averages improved by as much as 2.49 db as: 97% of staff believed they had enough education to adopt the quiet time; 94% felt quiet time was a positive change; 98% felt it helped to reduce noise levels during quiet times, and 47% outside of quiet times. overall, the staff sensed a quieter and calmer environment and improved satisfaction with the reduction in nursery noise levels. conclusions despite availability of a cpg and staff awareness, the noise levels in our nicn exceed recommended levels. education and implementation of a quiet time resulted in a modest decrease in sound levels, yet improved impression of a quieter and calmer environment. targeting operational factors of sound is a cost effective method to decrease these levels, but structural components need to be addressed as well. monitoring noise levels with current measuring devices is challenging. ongoing initiatives include moving bedside and handover rounds away from the baby, while continuing: involvement of the family; the provision of noise education to multidisciplinary staff; and measuring physiologic parameters of individual babies related to noise levels in the nicn. references 1. lahav a & skoe e. an acoustic gap between the nicu and womb: a potential risk for compromised neuroplasticity of the auditory system in preterm infants. frontiers in neuroscience. 2014; 8:1-8. 2. graven sn. the full term and premature newborn: sound and the developing infant in the nicu, conclusions and recommendations for care. journal of perinatology. 2000; 20:s88-s93. 3. american academy of pediatrics, committee on environmental health. noise: a hazard for the fetus and newborn. pediatrics. 2000; 100:724-727. 4. white, rd. acoustic environment. in report of the eighth consensus conference on newborn icu design: recommended standards for newborn icu design (27). 2012. retrieved from http://www3.nd.edu/~nicudes/. statement of financial support none of the authors, including leonora hendson and danielle m. smith, have financial relationships with commercial entities to disclose. figure 1. hourly noise levels at baseline and after education and implementation of a quiet time 57 56 55 54 53 52 51 d ec ib el ( d b ) d ec ib el ( d b ) hour of day 50 49 48 47 46 45 44 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 baselineleq after qtl10 unit hourly average comparison before and after quiet time 60 52.0 51.3 59.5 59.3 44.5 45.0 55 50 45 40 35 30 25 20 15 10 5 0 baseline average after qt average baseline max after qt max baseline min after qt min unit average, max and min comparison before and after quiet time implementation developmental observer • 2017 • 5 early development of very preterm infants: effects of feeding approach and neurological vulnerability iris morag,1 yedidia hende,1 tzipi strauss,1 ronny geva2 1 the edmond and lily safra children’s hospital at chaim sheba medical center affiliated to sacler medical school tel-aviv university. 2 the gonda institute of brain sciences at bar-ilan university. background scheduled interval feeding of prescribed enteral volumes is the current standard practice for preterm infants. however, feeding preterm infants in response to their hunger and satiation cues rather than at scheduled intervals, may help in the establishment of independent oral feeding, increase nutrient intake and growth rates, and allow for earlier hospital discharge. objectives to assess the effect of feeding methods (traditional vs. individualized cue based paced feeding (icbpf) and neurological maturity [brainstem evoked response (abr): dysfunction vs. typical function] on clinical outcomes of preterm infants. we hypothesized that icbpf will positively affect medical and developmental outcomes of preterm infants, in particular, infants with brainstem dysfunction, during and after discharge from the newborn intensive care nursery (nicn). methods this work, currently in progress, includes 115 low-risk premature infants born at <32 ga. all infants were appropriate for gestational age and born in a single medical center. intervention began upon reaching 34 weeks of gestation, the time point in which oral feeding is offered. these infants were divided into three groups: group 1: traditionally fed historical (tf, n=53). a retrospective group of traditionally fed infants (predefined amount every three hours). sixty-two infants were randomized into two experimental groups: group 2: experimental icbpf (ipf, n=28). feeding intervals and volume intakes were determined by parent(s) or caregiver(s) who identified infant hunger and satiety by reading the infants’ behavioral cues. group 3: traditionally fed control (viewed as an intermediate level group) (if, n=34). a traditionally fed group which was recruited parallel to the ipf group, and was thus influenced by the feeding protocol shift in the nicn. abr (n=25) were measured by a trained audiologist in the nicn. results the ipf group transitioned to full oral feeding quicker compared to the tf and if groups (f= 16.35, p<.001). weight gain during the first transition week was lower in the ipf group compared to the tf group. in the second week weight gain was highest in the ipf group (f = 8.46, p<.001). the ipf were discharged earlier from the nicn (f = 4.53, p<.05). further, infants diagnosed with brainstem dysfunction benefitted more from ipf compared to non-compromised infants in terms of weight gain and transition to full oral feeding (f=13.98, p≤.001). anova indicated that abr dysfunction predicted more apnea/ desaturation events during the intervention period (f = 4.76, p<.05). conclusion this preliminary data may point to the positive effect of icbpf intervention on clinical outcome of vlbw premature infants. intervention gains seem to be moderated by infant’s integrity of abr, suggesting involvement of brainstem related pathways in the susceptibility and in feeding intervention efficacy in preterm newborns. references mccormick fm, tosh k, mcguire w. ad libitum or demand/semi-demand feeding versus scheduled interval feeding for preterm infants. cochrane database of systematic reviews 2010, issue 2. art. no.: cd005255. doi: 10.1002/14651858.cd005255.pub3. average weight gain per day 2nd transition w g ra m s if ipf brainstem dysfunction brainstem typical function 45 40 35 30 25 20 15 6 • 2017 • developmental observer background frequently the question arises within the newborn intensive care nursery (nicn) as to when and how to appropriately transition newborns to exclusive supine positioning that is consistent with a “safe sleep environment” for the prevention of sudden infant death syndrome (sids). in the nicn, infants are often placed prone or on their side with positioning aids to: improve lung oxygenation,1 mediate newborn stress responses,2 and to support and shape the developing musculoskeletal system.3,4 as a result, many infants that are admitted to the nicn regularly sleep in the prone position during the early weeks of their care; this prone positioning has been noted to be a risk factor associated with sids after discharge, presumably due to parental use of care practices observed in the nicn.5,6 to address the unique situation posed by a nicn admission on safe sleep practices, recent safe sleep guidelines, per the american academy of pediatrics (aap), recommend initiating a transition to supine sleep positioning “as soon as the infant is medically stable and well before the infant’s anticipated discharge, by 32 weeks postmenstrual age.7 however, the guideline leaves it unclear as to how to fundamentally assess “medically stable” in the patient receiving intensive care services and how to determine the sequence of a “transition” to supine sleeping without postural support. in addition, little evidence exists that supports 32 weeks postmenstrual age as a developmentally appropriate age for full guideline implementation.8 the literature states that competency in sleep is a multi-systemic, dynamic concept.2,9 any assessment of readiness in the newborn must account for the emerging, yet fluctuating competence, of preterm infants to maintain sleep states, respirations, and muscle tone in the face of internal and external stimuli.9 to my knowledge, such a tool does not exist. the safe sleep readiness rubric (ssrr) was developed based on the recognition that, while the aap guideline recommends that premature infants begin to transition to a safe sleep environment at 32 weeks in the nicn setting, there is no guidance in the literature on how to do so, and there is also a lack of criteria to establish developmental readiness for supine sleep that supports physiological stability and neuromuscular and neuroregulatory functions in premature infants.8 this transitioning process is challenged by the immature, or dysmature, development of inhibitory, descending neurological pathways in the convalescing preterm infant. because a theoretically-grounded and validated assessment did not exist that can be used in a clinical application at-the-bedside, the ssrr was developed using als’ synactive theory as a construct. this rubric proposes to fill a gap in clinical practice by using a theoretical framework to recognize an infant’s multi-dimensional subsystem capacities in the context of safe sleep environment readiness, while also providing a quantitative score that can be used to guide the weaning of developmental positioning aids, predict success in weaning of aids, as well as to suggest the need for supports when necessary. by recognizing and responding to the infant’s need for continuous regulation, transitions to a safe sleep environment can be individualized and promoted when they are developmentally appropriate, regardless of their postmenstrual age, with greater success and continuity, and thus avoid delays in discharge and provide parents with positional strategies that offer the safest sleep environment upon the infant’s discharge. objectives the aims of this pilot study were to: 1) test the feasibility and validity of the ssrr, developed by the principal investigator; 2) objectively evaluate neurodevelopmental regulation in newborns who are considered appropriate for inclusion in the safe sleep protocol as defined by the aap recommendation; and 3) to standardize an operational definition of physiologic stability in the context of safe sleep guidelines. methods rubric description the ssrr is an adaptation of the assessment of preterm infants’ behavior (apib).9 the rubric assigns a rating (disorganized=5, moderately disorganized=10, mildly disorganized=15, more organized=20) to four neurobehavioral dimensions and one measure of respiratory support. a score of 25-100 may be attained to rate the infant’s neurobehavioral capacity during mild perturbances, right before the beginning of care interactions. the neurobehavioral dimensions are: 1) state of arousal; 2) motor tone; 3) autonomic stability; 4) regulatory capacity; and 5) current respiratory support. scores closer to 100 reflect mature, neurodevelopmental competence. scores at the lower end of the scale represent relative requirements for co-regulatory support to further enhance successful supine sleeping in the context of mild perturbances. successful supine sleeping is defined as: 1) the infant being free of apnea and bradycardia during sleep and/or drowsy states; 2) sustained muscle tone and posture; 3) age appropriate state control, and 4) the infant’s capacity to self-regulate and habituate to external stimuli in order to maintain a sleep state when appropriate. patients and methods this pilot trial was reviewed and accepted by the nationwide children’s safe sleep taskforce and the institutional review board of nationwide children’s research institute. infants from the mount caramel st. ann’s level iii nicn (a nationwide children’s nicn) were assessed using the ssrr by nursing and occupational therapy staff from the nursery. six staff members attended a two-hour in-service on the developmental nature of postural control, sleep/state development and the continuum of neurobehavioral regulation in premature infants. each trained staff person demonstrated accurate use of the scale prior to initiation of data collection. for one month, trained nurses and safe sleep readiness rubric pilot study jennifer hofherr, nationwide children’s hospital, columbus, ohio developmental observer • 2017 • 7 therapists used the scale during their shifts to observe infants who were considered appropriate, based on the aap guideline (>32 weeks gestation and medically stable), for safe sleep positioning. these nurses were asked to use the scale, document the score, and note if the infant qualified for the safe sleep guideline and whether or not the safe sleep policy was being followed. the caregiver was asked if the infant was medically stable by her own assessment and the observing nurse documented the caregiver’s response and noted the presence of specific criteria that was developed to indicate potential signs of medical instability (i.e. need for oxygen support greater than 1 liter, iv fluids, status post-surgical procedure, etc). observers noted comments as to why an infant may not be placed in a safe sleep environment if so observed. additionally, staff made notes as to how reliable the scale was throughout a shift and whether or not the nurse would make any changes to the scale. positioning recommendations were not made based on the safe sleep rubric score nor was the medical team advised of the score. results data was collected on 44 infants with a total of 182 observations completed. the average number of observations done per infant was 4.1 with a range of 1-13 observations completed per infant. gestational age at birth ranged from 24.2 to 39.2 weeks with the average gestational age equivalent to 32.1. caregivers appeared to be equally likely to consider an infant “medically stable” despite meeting criteria identified by the study team (active withdrawal, high flow oxygen, iv nutrition, etc.) as he/she is to state infant is “medically stable” in the absence of criteria. (chart 1) presence of pre-determined criteria for medical stability provided a good correlation with rubric scoring. in chart 2, scores and average pca trends down as medical stability changes based on perception and presence of perception. the last columns represent only three data points. these seem to be outliers. further statistical analysis will be helpful to determine if particular criteria are more critical than others. rubric scores tended to trend up as age increased. chart 1. defining medical stability chart 2. scores/ages by medical stability 41% 43% 14% 2% ms per rn; no criteria ms per rn; criteria checked not ms per rn; criteria checked not ms per rn; no criteria 90 80 70 60 50 40 30 20 10 0 a xi s la b el ? ms per rn; no criteria ms per rn; criteria checked not ms per rn; criteria checked not ms per rn; no criteria 8 • 2017 • developmental observer in chart 3, the rubric seems to reflect the infant’s developing capacities as well as the impact of overall stability on the expression of developmental readiness for ssp. readiness for safe sleep practices may be recommended for infants with a score > 85. one of the most interesting findings was that the infants who received any support after 32 weeks pca appear to show readiness for ssp earlier than those infants who were not provided with positioning aids after 32 weeks pca. in chart 4, average ga at birth is the same for both groups. nineteen infants never achieved a score of 85 when observed. it is not possible to know if those infants achieved a higher score prior to discharge or not, or if there were any consequences of a lower score prior to discharge on outcomes. the future research study would look specifically at this question. conclusions readiness for supine sleep position in the preterm infant may be considered a developmental milestone that unfolds as a result of support to the underlying mechanisms necessary for all developmental skills: physiologic, motoric, state and regulatory competency. as such, a tool that will guide the caregiver to give the “just right” support to the developing postural system may enhance compliance with the safe sleep protocol without delaying discharge. based on the pilot data, an intervention study has been accepted by the institutional review board to further investigate the impact of the use of the rubric on behavioral outcomes and length of stay. additionally, an operationalized definition of “medical stability” in the context of safe sleep readiness has been created and added to the hospital safe sleep policy. nurses and therapists now collaborate to assess and assign appropriate positioning interventions based on a common language and understanding of the infant’s emerging capacities to achieve the developmental milestone of secure, supine sleeping. references 1. gouna g, rakza t, kuissi e, pennaforte t, mur s & storme l. positioning effects on lung function and breathing pattern in premature newborns. the journal of pediatrics. 2013; 162 (6): 1133–1137. 2. peng n-h, chen l-l, li t-c, smith m, yuchang y-s& huang l-c. the effect of positioning on pre-term infants’ sleep-wake states and stress behaviors during exposure to environmental stressors. journal of child health care. 2013; oct 3: 1-12. 3. nakano h, kihara h, nakano & j, konishi y. the influence of positioning on spontaneous movements of preterm infants. journal of physical therapy. science. 2010; 22: 337-344. 4. sweeney jk & gutierrez t. musculoskeletal implications of preterm infant positioning in the nicu. journal of perinatal neonatal nursing. 2002; 16 (1):58-70. 5. moon ry. american academy of pediatrics, sids and other sleep-related infant deaths: expansion of recommendations for a safe infant sleeping environment. pediatrics. 2011; 128 (5):1030-1039. 6. american academy of pediatrics, committee on fetus and newborn, hospital discharge of the high-risk neonate. pediatrics. 2008; 122 (5):1119-1126. 7. mcmullen sl. transitioning premature infants supine: state of the science. maternal child nursing. 2013: 38 (1) 8-12. 8. patient/family care policy nationwide children’s hospital columbus, ohio. subject: safe infant sleep environment, number: xi-5:60 originated: 5/31/2005, revised: 1/06, 11/06, 5/07, 10/10, 3/13, 7/13. http://anchor.columbuschildrens.net/webapplications2/doccontent/ documents/policies/005-060.pdf 9. als h, butler,s, kosta s & mcanulty g. the assessment of preterm infants’ behavior (apib): furthering the understanding and measurement of neurodevelopmental competence in preterm and full-term infants. mental retardation and developmental disabilities research reviews. 2005; 11: 94-102. acknowledgement grateful recognition for guidance and assistance for this pilot study is extended to jenn gonya, phd, roberta thomas, mpt, and ruth seabrook, md. statement of financial support jennifer hofherr has no financial relationships with commercial entities to disclose. chart 3. post conceptual age and readiness score (higher score=greater readiness) chart 4. age at first threshold score per positioning experience 35.6 35.4 35.2 35.0 34.8 34.6 34.4 34.2 34.0 33.8 33.6 a xi s la b el ? scores <65 scores 70-80 scores >85 37 36 35 34 33 32 31 30 29 a xi s la b el ? received pa ssp only developmental observer • 2017 • 9 background the newborn intensive care nursery (nicn) environment is a stark contrast to the expectations of developing infants and can induce parental stress and anxiety that have lifelong effects. fundamental to the infant’s developmental trajectory is early parent-infant contact. maternal touch, especially during skinto-skin contact (ssc) can reduce the adverse consequences of prematurity. ssc is an evidenced based holding strategy that increases parental proximity and provides a continuous interactive environment known to enhance infant physiologic stability and affective closeness within the parent-infant dyad.1-4 animal studies demonstrate that parent-infant proximity and touch can activate the oxytocinergic system. another key role that the oxytocinergic system plays is in bond formation and parenting.4,5 in turn, oxytocin release stimulates bonding and parenting behaviors by a bio-behavioral feedback loop.6-8 in limited human studies, parental plasma oxytocin concentrations were positively related to mother-infant affectionate contact and father-infant stimulatory contact at six months postpartum.9-10 demonstrated differences in behavioral responses such as state regulation and improved motor system modulation even after short interventions of ssc have been reported.11 biobehavioral responses of cortisol and improved maternal infant co-regulation have also been reported.12-13 objectives the purpose of this study was to examine bio-behavioral mechanisms associated with maternal and paternal skin-to-skin contact (m-ssc and p-ssc) with healthy premature infants. specifically, changes that occur in infant and parental (mother and/or father) salivary oxytocin (ot) and salivary cortisol levels during ssc which will be associated with simultaneous reductions in anxiety and with later outcomes reflecting improvements in infant neurobehavioral development and responsiveness with parentalinfant interaction. fathers are included in the study in an effort to examine the ot mechanism associated with ssc, as well as to engage fathers in the practice of ssc. the specific objectives of this study were: 1. examine biological mechanisms pre, during and post ssc in parents with stable preterm infants. hypotheses: a) parents’ (mother and/or father) salivary ot levels will be higher during m-ssc/p ssc, compared to pre and post-ssc; b) parents’ (mother and/or father) salivary cortisol levels will be lower during m-ssc/p-ssc, compared to pre and post-ssc; c) changes in parents’ (mother and/or father) salivary cortisol levels, duringvs. preand duringvs. postm-ssc/p-ssc, will be correlated with changes in parents’ anxiety scores. 2. examine biological mechanisms pre, during and post ssc in parents with stable preterm infants the role of ot in with the infant’s behavioral, autonomic and stress responses. hypotheses: a) changes in infants’ ot levels, duringvs. premssc/p-ssc, will be correlated with changes in infant hrv; b) infants salivary ot levels will be higher during m-ssc/pssc compared to preand post-ssc; c) infants salivary cortisol levels will be lower during m-scc/p-scc compared to preand post-ssc. methods this randomized cross-over design study used a three-day timeframe conducted in the nicn. utilizing a convenience sampling approach, the participants consisted of 28 stable preterm infants (30 0/7 – 34 6/7 weeks gestational age 3 -10 days old) and their mothers and fathers. after informed consent, each infant-mother-father triad was randomly assigned to one of two sequences: m-ssc conducted on day 1 and p-ssc on day 2; or p-ssc on day 1 and m-ssc on day 2. infants’ and parents’ saliva samples for ot and salivary cortisol assays were collected pre-ssc, 60-min during-ssc, and 45-min post-ssc. infants’ spectral analysis of heart rate variability (hrv), and parental anxiety was measured at the same three time points. in addition, infant outcomes were examined in relationship to parent (mother and/or father) oxytocin/cortisol levels. the parent-infant interaction assessed during a five-minute video using dyadic mutuality coding (dmc) was completed prior to hospital discharge. parental eligibility criteria were: 1) > 18 years old; 2) english speaking; and 3) without history of depression. a maternal history of the diagnosis of depression is a significant predictor of postpartum depression and may influence ot.7,14 based on limited data that were collected from previous triads, mean changes in salivary ot levels provided a standardized effect size (cohen’s d) of 0.50, an effect of precisely medium magnitude. a sample size of 28 triads will provide 80% levels of power for m-ssc/p-ssc with one-sided tests at the 5% level of statistical significance. mccall (1986) has endorsed one-tailed tests as long as there is “some reason” to predict the direction of the outcome.15 cong and colleagues’ previous work provided insight into the directional possibilities for this proposal which allowed the use of one-tailed testing.16 bio-behavioral mechanisms during maternal/paternal skinto-skin contact with preterm infants dorothy vittner,1-2 xiaomei cong,2 jacqueline mcgrath,2-3 joann robinson,4 gretchen lawhon5 and regina cusson2 1 connecticut department of developmental services, hartford, ct. 2 university of connecticut, school of nursing, storrs, ct. 3 connecticut children’s medical center, hartford, ct. 4 university of connecticut, human development and family studies, storrs, ct. 5 west coast nidcap & apib training center at the university of california san francisco school of medicine. 10 • 2017 • developmental observer results analyses of data were done using bivariate statistical methods to test for changes in infant, maternal and paternal ot and cortisol levels between the pre-ssc, during-ssc and post-ssc periods using spss22 software. using repeated measures analysis of variance (rm-anova) ot levels significantly increased for mothers (p>0.000), fathers (p>0.001) and infants (p>0.000) during ssc compared to pre and post-ssc. parental anxiety scores were correlated to parental salivary ot and cortisol level. relationships between changes in infant ot levels during ssc and later levels of reciprocity and synchronicity within parent-infant interactions measured with dmc total scale scores will be evaluated. parental ot levels during ssc and subsequent dmc total scale scores will also be explored for ot influences on parental responsiveness during interactions with their infant. conclusions oxytocin release was activated in mothers, fathers and infants during ssc. salivary cortisol levels significantly decreased for infants during ssc indicating that ssc may be used as a strategy to decrease infant stress in the nicn. this study addressed the gap in understanding the mechanisms that link parent-infant contact to bio-behavioral responses, which is an important step in exploring ot as a potential moderator to improve infant developmental outcomes and the effect on responsive interactions between mother and infant as well as the father and infant. the practice of ssc remains inconsistent despite strong evidence supporting its use.3,17-20 these findings may also increase health professionals’ interest and motivation to encourage more universal use of ssc. statement of financial support the authors have no financial relationships with commercial entities to disclose. this study was completed with financial support from the national association of neonatal nurses ($5000), the american nurses foundation: eastern nursing research society ($4997) and the university of connecticut, school of nursing, toner grant ($3000). references 1. bergman nj, linley ll & fawcus sr. randomized controlled trial of skin-to-skin contact from birth verses conventional incubator for physiologic stabilization. acta pediatrics. 2004: 93(6):779-785. 2. feldman r & eidelman ai. skin to skin contact (kangaroo care) accelerates autonomic and neurobehavioral maturation in preterm infants. developmental medicine child neurology. 2003; 45(4):274-281. 3. ludington-hoe s. evidence-based review of physiologic effects of kangaroo care. current women’s health reviews. 2011: 243-253. 4. moore er, anderson gc & bergman n. early skin to skin contact for mothers and their healthy newborns. the cochrane database of systematic reviews. 2007: 3. 5. feldman r. sensitive periods in human social development: new insights from research on oxytocin, synchrony and high-risk parenting. development and psychopathology. 2015; 27: 369-395. http://dx.doi.org/10.1017/s0954579415000048. 6. mancini f, carlson c & albers l. use of postpartum depression screening scale in a collaborative obstetric practice. journal of midwifery women’s health. 2007; 52(5):429-434. 7. parker kj, kenna ha, zeiter jm keller j, blasey cm, amico ja, schatzberg af. preliminary evidence that plasma oxytocin levels are elevated in major depression. psychiatry research. 2010; 178(2), 359-362. 8. groer mw & morgan k. immune health and endocrine characteristics of depressed postpartum mothers. psychoneuroendocrinology. 2007; 32(2):133-139. 9. ross he & young lj. oxytocin and the neural mechanisms regulating social cognition and afflictive behavior. frontal neuroendocrinology. 2009; 30(4):534-547. 10. lee hj, macbeth ah, pagani jh & young ws. oxytocin: the great facilitator of life. progressive neurobiology. 2009; 88(2):127-151. 11. ferber sg & makhoul ir. the effects of skin to skin contact (kangaroo care) shortly after birth on the neurobehavioral responses of the term newborn: a randomized controlled trial. pediatrics. 2004; 113(4):858-865. 12. nue m& laudenslager m. salivary cortisol patterns of mothers and their preterm infants during holding. communicating nursing research. 2011; 44:284. 13. nue m & robinson j. maternal holding of preterm infants during the early weeks after birth and dyad interactions at six months. journal of obstetric, gynecological and neonatal nursing. 2010; 39:401-419. http://dx.doi.org/10.1111/j.1552-6909.2010.01152.x 14. chang hp, anderson gc & wood ce. feasible and valid saliva collection for cortisol in transitional newborns. nursing research. 1995; 44:117-119. 15. mccall rb. fundamental statistics for behavioral sciences (4th ed.). san diego, ca: harcourt brace jovanovich; 1986: 184-212. 16. cong x, ludington-hoe sm, hussain n, cusson rm, walsh s, vazquez v &vittner d. parental oxytocin responses during skin to skin contact with preterm infants. early human development. 2016; 91:401-406. 17. vittner d, casavant s & mcgrath j. a meta-ethnography: skin to skin holding from the caregiver’s perspective. advances in neonatal care. 2015; 15(3):191-200. 18. mccain gc, ludington-hoe sm, swinth jy & hadeed aj. heart rate variability responses of a preterm infant to kangaroo care. journal of obstetric, gynecological and neonatal nursing. 2005; 34(6):689-694. 19. ludington-hoe s, anderson g, swinth s, thompson c & hadeed a. randomized controlled trial of kangaroo care: cardio respiratory and thermal effects on healthy preterm infants. neonatal network. 2004; 23:39-48. 20. mori r, khanna r, pledge d & nakayama t. meta analysis of physiologic effects of skin to skin contact for newborns and mothers. pediatrics international. 2010; 52:161-170. http:// dx.doi.org/10.1111/j.1442-200x.2009.02909.x. nidcap care in the moment steadying support developmental observer • 2017 • 11 background developmental care programs have been emerging in europe since the nineties in a highly variable way. in belgium, professor haumont and her staff of the saint pierre university hospital (spuh) in brussels have been pioneers in implementing this approach of care. newborn individualized developmental care and assessment program (nidcap) training started in this hospital unit in 1998. a major part of the project and training activities were financed by federal grants. between 2006 and 2010, the federal public service, health, food chain safety and environment (fps) established an agreement with spuh to support the creation of the brussels nidcap training center that was eventually established in 2007. the fps also began to support hospitals with maternity wards choosing to invest in the baby friendly hospital initiative (bfhi) for the promotion of breastfeeding. financial support was granted to hospitals that achieved the goals set forth by the bfhi. during the pilot phase two coordinators were appointed to assist hospitals in obtaining the bfhi label. today 27 of the 97 belgian maternity hospitals have been awarded this label. in 2012, the government continued its support in maternity wards by offering financial support if those hospitals chose to educate their medical and caregiving staff on a regular basis in breastfeeding, without the obligation of obtaining the bfhi label. in 2013, providing support for training in developmental care extended the breastfeeding contract. the decision to add developmental care to the scope of the contract was made in response to the demand of the caregivers and as a means of moving away from traditional newborn care towards family centered developmental and couplet care. the fps appointed a coordination cell to organize meetings and conferences to help realize this change in care, as well to provide site visits in settings that wanted to implement developmental care. currently 48 hospitals benefit from this educational contract on breastfeeding and developmental care. in june 2014, the government decided to finance ten newborn intensive care nurseries (nicns) to experience the nidcap process with the aim of increasing the developmental care practices in belgian nicus. one year later in june 2015 the nidcap training of two professionals in the supported nicns could begin. before starting the fps program, five of the 19 nicns and one medium care newborn unit were already engaged in nidcap training. to date, 13 of the 19 nicns are engaged in a nidcap training program, with one unit experiencing the process without fps support. objectives • to review the developmental care practices in belgian newborn units before governmental support on developmental care. • to evaluate the impact of governmental financial support on the change of care practices in belgian units. methods initially a survey concerning developmental care was sent to all 48 hospitals with an educational contract with the fps. the units were questioned on five care themes: environment (8 items), bedding and positioning (5 items), care procedures (15 items), feeding (20 items) and couplet care (12 items). when analyzing the results of the survey, the differences regarding developmental care practices between nidcap units (minimum one nidcap certified caregiver working in the unit) and nonnidcap units (no nidcap certified staff) were remarkable. in august 2015, the survey was resent to re-evaluate developmental care practices and the impact of the governmental support. a semi-quantitative analysis method was used to evaluate the surveys, aiming to give each theme a global score. to obtain this global score the items within the theme were allocated a number of points in relation to the importance of the item in developmental care practices. this allowed hospitals to have a broad idea about the baseline of developmental care practices in the units while enabling them to anonymously compare their scores and to position themselves compared to the median score for each item. a comparison in hospital practices was made regarding the impact of being bfhi labeled and the presence of nidcap certified professionals in the unit. the presence of nidcap certified staff had a significant impact on developmental care practice concerning feeding and care procedures, couplet care and the “global developmental score.” there is a positive correlation between the number of nidcap professionals and each of the developmental care themes except for bedding and positioning. these results must be interpreted with precaution because of the small number of units with nidcap certified professionals (table 1). being a bfhi labeled unit only had a significant impact on feeding strategies and the “global developmental score” (see table 1). the comparison in terms of improvement of developmental care practices between 2014 and 2015 did not demonstrate any statistical significance. nevertheless, an augmentation of the median was seen in the scores for the following themes: care implementation of developmental care in newborn units supported by the government: the belgian experience i. van herreweghe,1 d. druart,2 k. janssens,3 a. clercx,3 m. tackoen1 1 nicu chu st pierre, brussels nidcap training center. 2 service public fédéral santé publique, sécurité de la chaîne alimentaire et environnement, brussels nidcap training center. 3 service public fédéral santé publique, sécurité de la chaîne alimentaire et environnement, uz leuven. key words: developmental care; baby friendly hospital initiative; nidcap; public health care. 12 • 2017 • developmental observer procedures, couplet care and the “global developmental score.” it should be mentioned that the professionals who filled out the survey weren’t necessarily the same from one year to the next. most of the units were also involved in the process of implementing developmental care. this could explain a more severe scoring due to better comprehension of the concepts treated in the survey. also the re-evaluation was done after only a year, which is a relatively short period of time. a difference in practices was seen between nicns and medium care neonatal nurseries (mcnns). this is probably due to the fact that nicns have been alerted on the importance of developmental care in relation to a better outcome for preterm hospitalized infants in these units. only recently published data on the outcome of late preterms have pushed mcnns to evolve in this way of care. the developmental part of the contract is not mandatory even though an important adherence is noted in the majority of the mcnns. working groups on developmental care themes are set in place. there is a tendency towards improvement in developmental care in most of the units and the nidcap and bfhi contribute significantly to this progression. conclusions the actions of the belgian health authorities seem to meet the expectations of the newborn nurseries. there is a positive trend in changing the practice towards developmental care. financing guidance by two developmental care coordinators in the field, organization of conferences and the financing of nidcap training and elaboration of the bfhi seem to be productive. two thirds of the belgian nicn’s are engaged in nidcap® training. however, the results of the survey show a persisting gap between knowledge and practice. therefore the continuity of this support in the future is mandatory. a long-term evaluation is necessary in order to confirm the impact of the governmental support on the implementation of developmental care practices, and most importantly to evaluate the short and long term benefits for preterm babies and their families. statement of financial support none of the authors, including leonora hendson and danielle m. smith, have financial relationships with commercial entities to disclose. themes scores for nidcap units scores for nonnidcap units comparison (test t) environment 7.96 +/2.37 5.74 +/2.73 p = 0.051 bedding /positioning 8.33 +/1.83 6.53+/2.59 p = 0.111 care procedures 7.81 +/1.87 4.82 +/2.27 p = 0.004* feeding 8.27 +/1.66 6.16 +/2.13 p = 0.027* couplet care 7.31 +/2.22 4.94 +/2.34 p = 0.026* total dc score 79.36 +/18.12 56.39 +/18.03 p = 0.006* themes bfhi nonbfhi comparison (test t) alimentation 7.04 +/2.35 5.71 +/1.73 p = 0.050* total dc score 65.05 +/19.91 52.49 +/17.14 p = 0.038* *significant improvement in dc practices p<0.05 table 1. impact of the presence of nidcap certified professionals in the unit and the bfhi label on the improvement of developmental care (dc) practices. developmental observer • 2017 • 13 background developmentally supportive environments are known to improve medical outcomes for hospitalized newborns and are considered the overarching philosophy for practice in the newborn intensive care nursery (nicn).1 despite developmental care standards, the application of developmental care may be influenced by environmental constraints, staff knowledge deficits and communication.2 globally, the use of developmental rounds to highlight the application of individualized strategies in practice is being increasingly utilized as a measure to counter some of the barriers to developmental care application.3 objectives • to ensure premature and fragile at risk newborns are reviewed by developmental specialists during their admission. • to increase parental and staff understanding of developmental care and its application. • provide readily accessible developmental care recommendations and strategies to support the provision of individualized care. methods the surgical nicn, at the grace centre for newborn care, sydney children’s hospital network, westmead, australia has utilized interdisciplinary developmental rounds since 2005 as a means to support the application of consistent developmentally supportive interventions. in 2013, the model and process was revised. members of the developmental team were expanded to include nidcap professionals, medical, nursing, lactation, physiotherapy, speech and occupational therapy staff members. criteria for developmental consults were refined to include medically fragile infants, and the frequency of the round increased from once to twice weekly in response to an increasing number of consults. documentation was modified to include a visual tool, a “green dot,” increasing accessibility to information for families and staff. the green dot is handwritten by the developmental team for each baby and includes the babies name, gestational age at birth and current age, developmental goals and strategies that can be utilized to support the infant in the unit by both nursing staff and parents. green dots are placed in a location at the infants bed that can be easily seen by members of the multidisciplinary team and parents. the dots are reviewed approximately every two weeks and reflected to update the infants changing needs. results from january to december 2015, 283 developmental team consults, of which 42% (120) were follow-up consultations, occurred. twenty-eight percent of unit admissions were seen by the changing focus of interdisciplinary developmental rounds to support newborns, families and staff in a surgical newborn intensive care nursery nadine griffiths grace centre for newborn care, sydney children’s hospital network, westmead, australia contact: nadine.griffiths@health.nsw.gov.au pictures of the “green dot” 14 • 2017 • developmental observer the developmental team. of 225 (80%) developmental team consultations, utilizing the “green dot,” both staff and families indicated a positive response to this tool. sixty-six percent of the consults occurred for infants >42 weeks gestation. five hundred ninetysix (596) developmentally supportive strategies were discussed and documented with parents and nursing staff. a range of 21 strategies were recommended by the team, with positioning (10%) and seating (9%) most frequently identified. conclusions the use of developmental rounds in the surgical nicn has evolved to meet the needs of a changing population and workforce. further evaluation of their influence on the newborns’ admission and developmental outcomes are currently being explored. references 1. butler s & als h. individualized developmental care improves the lives of infants born preterm. acta paediatr. 2008 sep; 97 (9): 1173-5. pmid: 18616626. 2. coughlin m, gibbins s & hoath s. core measures for developmentally supportive care in neonatal intensive care units: theory, precedence and practice. j adv nurs. 2009 oct; 65 (10): 2239–2248. 3. lisanti aj, cribben j, connock em, lessen r, medoff-cooper b. developmental care rounds: an interdisciplinary approach to support developmentally appropriate care of infants born with complex congenital heart disease. clin perinatol. 2016; 43(1):147-56. statement of financial support none of the authors have financial relationships with commercial entities to disclose. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery assessment and certification program (nnacp) the nidcap nursery assessment and certification program (nnacp) provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. external review and validation by the nfi may be sought when a nursery feels it has achieved this goal. successful nidcap nursery certification, the ultimate goal, denotes distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment. nurseries that have achieved this recognition serve as a model and an inspiration to others. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nnacp director at: nnacpdirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve developmental observer • 2017 • 15 developmental care: a global perspective kaye spence,1 gretchen lawhon,2 welma lubbe,3 & patricia fernandez diaz4 1 grace centre for newborn care, the children’s hospital at westmead, schn, australia. 2 clinical nurse scientist, nidcap federation international. 3 north-west university, south africa. 4 universidad del pacifico, chile. introduction developmental care was first described in the early 1980’s. since then it has been promoted as the optimal model to guide practice in newborn intensive care nurseries (nicns) for premature and sick newborns. various models have been described with multiple implementation strategies. this phenomenon has spread over the past three decades with a common language to identify infant behavior and supportive care-giving strategies. objectives to determine the spread of developmental care and the various components that are used in practice across many countries and continents. methods a literature search was undertaken for the past five years. a survey was constructed from the literature that identified 18 components of developmental care and six possible well known training/education programs. this online survey was circulated on international email distribution lists and the nfi google groups. the survey was further distributed widely within two countries to capture variance within specific countries. results the literature search yielded over 200 articles covering all aspects of developmental care including theoretical frameworks, review articles and original research. the lead authors represented 25 countries. a total of 95 online surveys have been returned representing 30 countries. eighty percent indicated developmental care was led by nurses. the components of developmental care that are used on a consistent basis included: the use of nests and buntings (82%); open access for parents (81%) and positioning (76%). components of developmental care that were not often utilized included: parent councils or committees; single care rooms; sibling care; and developmental rounds. nidcap (59%), apib (17%) and general movements (17%) were the most often used training/education programs. several nurseries had in-house programs. there were also differences in the uptake of developmental care between high and low resource countries. conclusions from this exploration, developmental care has reached across five continents. with a global aim of improving care to premature and sick infants, developmental care continues to move forward in many countries. however, low resource countries are in need of support to enable developmental care to have a more global reach and effect. statement of financial support none of the authors have financial relationships with commercial entities to disclose. mission the nfi’s mission is to promote the advancement of the philosophy and science of nidcap care and to assure the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, may 1, 2015 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship-based, family-integrated approach. adopted by the nfi board, may 1, 2015 16 • 2017 • developmental observer background nidcap and apib training require the commitment of the nidcap trainer, trainees and their respective institutions to ensure the protection of time, support of frequent travel, and payment of training fees. regular sessions with a trainer are recommended throughout the training process, although the exact number of such days is dependent on each trainee’s progress. the challenges that arise in honoring these commitments, particularly international travel, can lead to very lengthy training. this may lead to the withdrawal of staff from training or the withdrawal of institutional support, if the extended length of time is viewed as lack of progress. online, audio-visual communication was implemented recently to augment nidcap and apib training. a pilot survey of the trainers and trainees who participated in the online, audiovisual training was conducted. objectives to present the experience of using online, audio-visual communication to augment nidcap and apib training. to stimulate discussion about the use of online technology as a means to augment successful training. approach a pilot survey was designed and circulated amongst the five authors, during may and june 2016. email feedback on the initial draft survey was provided by all five authors. one author collected the responses and prepared the draft of this abstract. no statistical analyses were performed as there were only five nidcap professionals included in this pilot survey. we did not intend to show statistical or clinical significance of our findings, but to use our experience as the basis for the hypothesis that online training can be used to successfully augment the frequently required on-site/live training sessions. results zoom (https://zoom.us) was the most frequently used online method of audio-video communication and enabled online sessions between usa, canada, australia, france and holland. zoom took between one to three hours to set up and learn and was used from hospital or home. sessions involved apib mentoring, review of training materials for trainers-in-training, and consultation. videos [apib exam], and documents were shared over zoom, enabling rich and productive discussions, although at times there were delays in the online connection. all five responders felt that the sessions were “somewhat” to “highly effective” and were similar to real-life conversations as non-verbal communication was visible. these sessions enabled mentoring to continue when international travel was not possible, and provided timely support when the interval from last training session was long. sessions were between 15 minutes to several hours long, depending on the purpose of each online meeting. the responders felt that online sessions augmented training, allowed for more frequent mentoring, and was more effective than email. the elimination of international travel substantially reduced costs. however, respondents felt that online sessions should not entirely replace the required, on-site nidcap or apib training sessions. online training could help to address the limited availability of trainers/master trainers, with respect to the successful introduction of nidcap and apib to other centers conclusions online audio-visual technology seems to be an effective method for mentoring the ongoing progress of nidcap and apib trainees. expanding this preliminary survey may provide more detailed guidelines for the use of audio-visual technology to enhance training and ensure trainee and trainer success. statement of financial support none of the authors have any financial relationships with commercial entities to disclose. online technology augments nidcap and apib training joy v browne,1 juzer m tyebkhan,2 andrea nykipilo,2 kaye spence,3 nadine griffiths4 1 university of colorado anschutz medical campus; fielding graduate university. 2 stollery children’s hospital, northern alberta neonatal program, edmonton, canada. 3 grace centre for newborn care, sydney children’s hospital network (westmead), australia. 4 sydney children’s hospital network (westmead), australia. key words: nidcap training, apib training, online communication; audio-visual technology developmental observer • 2017 • 17 introduction the birth of an infant requiring hospitalization in the newborn intensive care unit (nicu) uniformly is reported to be stressful for parents and family members. this study aimed to determine parent-staff communication in the nicu and its relationship to parent stress. methods the participants in this descriptive-correlational study were 203 iranian parents with preterm infants hospitalized in the nicu. the subjects were selected by the quota sampling method. data collected included a three-part questionnaire: 1) demographic parent and infant information; 2) parent-staff communication scale (the score of which ranged from 0-180); and 3) parental stress scale (the score of which ranged from 0-102). descriptive and inferential statistics including the pearson correlation coefficient test were applied to the data, using spss software, version 16. results this study revealed that fathers’ and mothers’ stress and communication scores were almost comparable and both higher than expected. the total mean score of the two main variables, parent-staff communication and parental stress were respectively: 100.72 ± 18.89 and 75.26 ± 17.6. a significant inverse correlation was found between parental stress and parent-staff communication scores (r = -0.144, p = 0.041). conclusions this study’s findings demonstrated that supportive parent-staff communication is related to lower parent stress scores. it is recommended that nurses and physicians receive specific skill training for the establishment of effective parent-staff communication. it is anticipated that such improved staff skills will help decrease parent stress and therewith likely promote parent and infant health in the nicu. parent-staff communication and parental stress in the newborn intensive care nursery marzieh hasanpour,1 fatemeh azizi,2 mousa alavi,3 heidelise als4 1 pediatric and newborn intensive care nursing education department, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 2 taleghani medical center, ilam university of medical sciences, ilam, iran 3 nursing and midwifery care research center, faculty of nursing and midwifery, isfahan university of medical sciences, isfahan, iran. 4 department of psychiatry, boston children’s hospital and harvard medical school, boston, ma contact: marzieh hasanpour the nfi thanks sonicu and dr. brown’s for their continued support this year. the generous support of these sponsors helps the nfi raise global awareness of the need for nidcap care and enhances opportunities to develop educational programs to broaden the reach of this care to more and more nicu professionals and the ‘preterm families’ they serve. sonicu is recognized as a leader in nicu monitoring technology. sonicu’s mission to measure and monitor is rooted in the passion to protect and the desire to create a safe, healing environment. for decades, parents have relied on dr. brown’s® products to make sure their babies receive the best nutrition from the start, including longtimefavorite natural flow bottles that help reduce feeding problems like colic, spit-up, burping and gas. now, the new dr. brown’s® medical product line extends the same dr. brown’s® healthy benefits to families with babies who have feeding issues, in addition to the medical professionals who play a critical role in infant development. our sponsors 18 • 2017 • developmental observer conference endorsed by the nidcap federation international, inc. engaging families in the nicu presented by the children’s hospital at the university of illinois nidcap training center and the cincinnati children’s hospital nidcap training & research center thursday april 27, 2017 8am – 5pm university of illinois at chicago student center west click here for conference brochure the 28th annual nidcap trainers meeting october 21–24, 2017 chateau lacombe 10111 bellamy hill rd nw edmonton, alberta t5j 1n7 canada hosted by the nidcap training center in development at stollery children’s hospital, edmonton (by invitation only) annual nfi membership meeting sunday, october 22, 2017 8:00am – 10:00am chateau lacombe 10111 bellamy hill rd nw edmonton, alberta t5j 1n7 canada http://nidcap.org/wp-content/uploads/2017/02/2017-5th-annual-mdcc-brochure.pdf developmental observer • 2017 • 19 developmental observer nidcap federation international board of directors and staff 2016–2017 the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net vice president james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary rita cummings, ma vice president–operations san francisco zen center email: ritacummings511@btinternet.com jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center email: n.conneman@erasmusmc.nl mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk gretchen lawhon, phd, rn, cbc, faan nidcap master trainer email: premieg@gmail.com kaye spence children’s hospital at westmead westmead, sydney, australia email: kaye.spence@health.nsw.gov.au björn westrup, md, phd director, karolinska nidcap training & research center email: bjorn.westrup@karolinska.se rodd e. hedlund, med director nidcap nursery assessment and certification program nidcap trainer email: nnacpdirector@nidcap.org sandra kosta, ba financial operations and administration director email: sandra.kosta@childrens.harvard.edu 2017 vol. 10 no. 1 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “when we try to pick out anything by itself, we find it hitched to everything else in the universe.” john muir message from the nfi president o ur founder and first president, heidelise als, phd, realized the importance of incorporating a solid theoretical framework supported by scientific evidence into a newborn intensive care nursery (nicn) care approach. she also recognized and worked to develop an accompanying educational training program. every year, more nicn professionals and nurseries adopt this evidence-based best practice framework.in 1990, a small group of nidcap developmentalists gathered in washington, dc and started the tradition of trainers and supporters coming together annually for education and support. in 2001, our group was formalized and therefore further strengthened by the formation of the nidcap federation international. the work of the board of directors of the nidcap federation international, like the nidcap program itself, is dynamic, continuously responsive to the changing needs of our members and the infants and families we serve. in 2016, i assumed the role of president of the nfi board of directors. striving to articulate and support our evolving vision while expanding the work of my predecessors is my task and my privilege. i will work to direct my efforts during my term in office on the organization’s needs in areas where i feel i can best contribute. my own nidcap journey has included being a nidcap and apib trainer and a collaborator and most recently as a champion for our organization’s advancement. i have focused on raising global awareness and positioning the nfi for increased outreach, engagement and financial resources. being the president of the nfi holds a new set of responsibilities for me. these responsibilities will be guided by the vision from our most recent 2015 strategic plan, where we “envision a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship-based, familyintegrated approach.” as we grow and adapt to serve ever more newborns and their families around the world, we face many challenges which, of course, also become our opportunities. my goal is to support those which are key: (1) to raise global awareness for nidcap to advance its reach and support its growth; (2) to support education and training especially in parts of the world where nidcap is underutilized; (3) to build on scientific evidence and understandings; and (4) to provide support, mentorship and cohesiveness within our organization and membership. how we will strive to realize our organizational next steps is through our greatest resource… the people who make up our organization. drawing from the talents, creativity and energies of our group, we are forming several new councils and task forces to: continued on page 2 table of contentsmessage from the nfi president .......... 1 abstracts .................................................... 4 meetings and conferences .................... 18 nidcap on the web ................................ 20 abstract edition deborah buehler, phd, nfi board of directors president http://nidcap.org/en/nfi-news/developmental-observer-the-official-newsletter-of-the-nfi/ 20 • 2017 • developmental observer nidcap on the web to learn more about the nfi and its programs please visit us at www.nidcap.org please visit the nfi’s youtube channel to watch videos about nidcap (in 13 languages) and the nnacp. www.youtube.com/user/nidcapfi the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. follow us on all of our social media platforms: like us on facebook follow us on twitter follow our posts on pinterest connect with colleagues on linkedin watch our videos on you tube read and participate on our nidcap blog http://nidcap.org/blog/ https://www.facebook.com/nidcap https://twitter.com/nidcap https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international https://www.youtube.com/user/nidcapfi http://nidcap.org/blog/ http://nidcap.org/blog/ https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international www.nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center (inactive) university of oklahoma health sciences center oklahoma city, oklahoma, usa director: andrea willeitner, md west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: vandenbergka@yahoo.com carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy@uclh.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: rachel wilson, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: hanne.aagaard@skejby.rm.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt nidcap germany, nidcap training center tübingen, tübingen, germany universitätsklinik für kinderund jugendmedizin director: christian poets, md phd contact: natalie broghammer, rn email: natalie.broghammer@med.uni-tuebingen.de n i d c a p t r a i n i n g c e n t e r s by order of establishment become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org http://nidcap.org/en/about-us/membership-overview/ 4 • 2021 • developmental observer background in 1998, under the leadership of professor dominique haumont, the first nidcap training started at saint-pierre university hospital. thanks to the coaching of dr. joy browne, senior nidcap master trainer, two staff members obtained their nidcap certificate. nidcap observations were regularly performed and became a part of the routine practice of modifying the environment, positioning infants in the incubator and adapting the organization and delivery of caregiving. all of this was achieved in the framework of a personalised approach, with the parents’ collaboration. local workgroups, including the multidisciplinary team and the heads of the unit helped in the implementation of nidcap. in 2005, a newly designed neonatology ward consisting of 16 rooms, 3 three-bed, 5 two-bed and 8 single rooms was inaugurated. the single room design included special spaces for the parents. the environment was adapted to best support the baby’s optimal development. progressively, as we observed the infants’ feeding behaviours, we started to reflect on our practices. at that time, babies were fed every three hours, at set times based on the caregivers’ schedules. oral feedings were supplemented by tube-feedings until discharge. infants were gradually given feedings every four hours in preparation for going home. parents were not involved in tubefeeding and, when they were not present, bottle feeding was used regularly even for breastfeeding infants. full breastfeeding rates by the time of discharge were low, around 20%. through our observations of infant behaviour, we realised babies were often fed when they were not ready or emotionally available. we also understood we were not attentive enough to some of the infant’s early and subtle attempts at eating. when we did notice their rooting behaviour and tried to meet their oral needs, it was mostly late towards the end of caregiving, when the infant had already spent a lot of energy. the information we reported on and shared among caregivers only concerned feeding methods and volumes of intake. there was no communication about the infant’s behaviour during the feeding, the quality and success of the feeding itself, the parents’ involvement in feeding, or what suited each baby best. aims the nidcap observations gave us details on some infants’ individual behaviours during feedings, suggesting the need for individual practice changes. because these findings were recurrent, we became aware of the necessity to modify the unit’s general feeding practices. in 2006, with this aim, we formed a multi-disciplinary work group including the unit’s leaders and reviewed relevant literature on the topic of feeding competence in preterm infants. the issues we wanted to address were the following: • how to reduce negative oral stimuli and encourage natural, positive experiences. • when to introduce the premature infant to their first feeding experience. • what is a successful feeding and how to provide a consistent and relaxing environment to support the baby’s developing competency? • how to manage tube feedings whilst facilitating the development of the parent-infant bond and their nurturing relationship. • how to adapt feeding schedules to phase in semi-demand feedings without systematically supplementing them by tube feeding. • how to increase full breastfeeding rates at discharge from the nicu. • how to convey information related to an infants’ feeding including but also going beyond the notion of volumes of intake. methodology review of the literature, visits to other units, and dialogue with experts in preterm infant feeding competencies enabled us to: • develop new work objectives and a new feeding protocol based on each infant’s individual behaviour and competence, which, in turn, enabled us to phase in semi-demand feeding. • stop using bottle feeding instead of breastfeeding and consider the use of alternative methods when parents were absent. • develop new monitoring forms detailing observations of sucking, swallowing, and breathing coordination. the notes also documented any modification of the infant’s physiologic parameters recorded during feedings, information about their behavioural state during feeding, the quality of the feeding, the infant’s distal and proximal environment, feeding methodology, and who fed the infant. • create an educational feeding brochure and organise weekly information meetings focussed on the parents. • work on the environment to facilitate the infant’s tucked position and offer them the opportunity to access and explore their fingers orally. • stop the practice of stimulating sucking during feeding by moving and pushing the bottle into the baby’s mouth. evolution of national guidelines to support the development of preterm infants’ feeding competencies and breastfeeding inge van herreweghe, delphine druart brussels nidcap training center, saint-pierre hospital, brussels, belgium doi: 10.14434/do.v14i2.33000 developmental observer • 2021 • 5 the whole team received theoretical information and training in the use of the new feeding protocol, the observation sheets and adapting the infant’s environment. results following implementation of the changes previously discussed and of the new protocol, we observed that: • infants started their feeding experiences earlier. • the quality of the feedings was addressed. • gradually involving parents in tube feeding was encouraged and facilitated interaction between the nurse, the parents, and the infant. • full breastfeeding rates at discharge increased. • instead of fewer feedings with larger volumes which were difficult for infants to manage, up to 8 12 smaller feedings were provided until discharge. • infants were developing their feeding competencies at their own pace without spending all their energy. this, in turn, enabled them to keep on developing their other competencies until discharge. continued integration of developmentally supportive feeding practices in 2007, we became a nidcap training centre and continued trying to maintain good practices for feeding preterm infants. we also advocated promoting the feeding protocol through our nidcap training sessions in other belgian and french hospitals, in nursing schools, and at conferences. progressively, we worked at reinforcing parental presence and their stay within the unit, which led to increased parental involvement in tube feeding. this was made easier through skinto-skin holding and skin-to-breast feedings. it was also facilitated by the opportunity for parents to sleep next to their baby. expansion to a national focus from 2014 to 2016, saint-pierre chu supported the transfer of delphine druart, nidcap trainer, to the public health ministry to assume the role of developmental care coordinator. her task was to promote nidcap and developmental care at the national level, in collaboration with kelly janssens, rn (currently a nidcap trainer-in-training at uz leuven, belgium). study days for staff at belgian hospitals were organised. meetings with teams occurred to inform and help them assess their practices and identify possible areas for change. within this context, the public health ministry decided in 2015 to set up an inter-hospital multidisciplinary workgroup to establish national premature infant feeding guidelines. many paediatricians, nurses, speech therapists, nidcap experts and breastfeeding advisors from different hospitals took part in the project. in 2018, the guidelines were completed and translated from french into dutch because national guidelines can only be published if they are in both country languages. the guidelines were sent to all belgian hospitals and made available on the public health ministry’s website. at the same time, we observed that many babies continued to receive feedings infused by a feeding pump every 1-2 hours as volumes of intake progressively increased. we then decided, together with dr. marie tackoen, head doctor of the nicu since 2015, and dr. inge van herreweghe, head of the clinic and the nidcap training centre since 2015, to allow pump feedings only on medical advice and after having first tried split and/or paced tube feedings, based on the infant’s behaviour. to achieve this, we involved parents by helping them provide tube feedings for their baby while monitoring the infant’s breathing and behaviour, interspersing the feeding with breathing breaks as needed. as a result, most babies who are tube fed receive parental skin-to-skin during a tube feeding by gravity flow instead of administered by a feeding pump. we also acquired more portable breast pumps, trained two breastfeeding advisors, and updated a breastfeeding brochure enabling mothers to monitor their daily milk production volume. all staff members in our unit were invited to attend free ongoing four-day breastfeeding training within the hospital. supporting breastfeeding in 2019, we developed a programme enabling us to transfer the mother and baby from the delivery room to the maternity and neonatal wards whilst keeping them skin-to-skin. the programme also allowed us to prolong the skin-to-skin time to at least 10 hours a day. in fact, this scheme had first been set up in the framework of a pilot project in our non-intensive neonatal unit (koala unit), where parents have been able to stay with their baby 24 hours a day since 2017. in the context of this program, we developed a new feeding method no longer based on the infant’s weight gain after a breastfeeding. we now assess the quality of the breastfeeding by using the fleur de lait”,1 a breastfeeding scale derived from the premature infant breastfeeding behaviour scale (pibbs).2 to proceed safely and cautiously, we tested this new protocol first on stable late preterm infants. of course, we help parents acquire progressive autonomy in the use of this method which works as follows: • the doctor prescribes a minimum daily volume of intake for the baby. • the nurse then calculates an hourly amount. • a maximal lapse of time between two feedings is defined by the team. • if the baby does not wake up at the end of the maximal lapse of time, the baby is fed by tube. if the baby breastfeeds, the fleur de lait score is calculated. if the score is less than 12, the baby’s intake is supplemented by a tube-feeding. the volume of this supplemental feeding is calculated according to the number of hours elapsed since the latest feeding deemed efficient (i.e., the score was higher than 12). this way, the baby is fed at their own pace as soon as they show signs of wanting to be fed. at the beginning of 2020, we extended this practice to infants in the neonatal intensive care unit. the whole team at6 • 2021 • developmental observer tended an information workshop. depending on the evaluation of this project, we hope to extend this protocol to even younger infants less than 34 weeks. the infants who experience this feeding regimen and longer skin-to-skin periods, reach the full breastfeeding phase earlier and are discharged sooner. we are assessing the impact of this approach on infant stability, age of autonomous feeding, age of discharge, and on the parents’ and team’s satisfaction. we hope to share these results in the future. as a part of the previous developmental feeding project, we set up a peer-to-peer breastfeeding support programme. we developed it with the help of volunteers who are parents of babies who stayed in our unit. the parents first benefited from an interview with the team’s psychologist, followed by training in breastfeeding, developmental care, and premature infant feeding. this project will also be evaluated as to the parents’ and volunteers’ satisfaction. we hope to also share these results soon. summary our goal is to make feeding a time of pleasure and bonding for babies and their parents. we are pleased that now 75% of preterm babies are receiving their mother’s milk on discharge from the neonatal unit. we are proud that these projects could go on even in covid-19 times. references: 1. petit i, grattepanche c. accompanying the progression of the premature baby at the breast thanks to the "fleur de lait". journal de pédiatrie et de puériculture 2012, 33(268):44-46, doi: 10.1016/j.spp.2012.07.011 2. lober a, dodgeson je, kelly l. using the preterm infant breastfeeding behavior scale (pibbs) with late preterm infants. 2020, clinical lactation 11(3), doi: 10.1891/clinlactd-20-00001 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 2022 • developmental observer • 5 the world being in a pandemic has made us re-think the way we do things and has challenged us about what is normal. one thing for certain is that the nidcap community has gone to great lengths in meeting the challenges and we hear of new innovations to the nidcap training. an example is the training occurring in rwanda and in this issue, patrick manibaho tells us about their efforts with nidcap training by distance. we learn about björn westrup and his brilliant work over several decades, sylvie mingy enlightens us on the achievements of the french nidcap training center in brest. with such inspirational people, the nfi can be proud of its members. the science and art of feeding newborns is explained by erin ross and marjorie palmer, in addition brenda tarka provides a way of helping babies feed. finally, we are taken on a parents journey of the highs and lows of intensive care in japan. it is important for all health care professionals to learn from and about cultural practices in different countries. last month we saw the celebration of nidcap through world nidcap day. jennifer degl writes about the celebrations and encourage us to think about next year. it is important that we continue to celebrate the achievements of the nfi and the membership. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia doi: 10.14434/do.v15i2.34359editorial jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board cover photograph of lara from sydney, australia used with permission. 2019 vol. 12 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “great things are done by a series of small things brought together.” vincent van gogh greetings from the editor it is a pleasure to write this editorial as the senior editor of the developmental observer. i was excited to be the successful applicant and i hope to see the developmental observer continue to serve the members of the nidcap federation international (nfi). it is certainly one of the successful resources and i look forward to working with you the members in making it an interactive newsletter for all things nidcap. i come with a history of editing a journal, a publication record and facilitating writing workshops. so you can see i do like to see the written word and using visuals as a way of communicating information. i am working with an enthusiastic editorial team and i am sure together we will continue to meet your needs for an informative and resourceful newsletter. i would encourage you to submit stories about your work and experiences with nidcap (email to: developmentalobserver@nidcap.org) as together we are a strong group making a difference for newborn infants and their families. we need to let the world know. an exciting direction for the developmental observer is to be indexed on scholarworks at indiana university, usa. this will be one of my goals in 2019 to ensure the back issues are archived and future issues are easy to find for all who are interested. watch this space for more information. this issue includes the abstracts from the 2018 nidcap trainers meeting successfully held in porto, portugal. for those lucky enough to attend it was an informative and exciting meeting with the hosts excelling themselves with their hospitality. the abstracts included in this issue come from many countries such as australia, belgium, canada, denmark, france, italy, iran, kingdom of saudi arabia, lebanon, and the usa which demonstrates the global spread of nidcap work. you can read about a variety of educational initiatives and some exciting research of the sounds in the environment, care practices such as skin-to-skin care, as well as some innovative ways to support nidcap observations through video and observing babies. a new feature has been introduced in this issue. jeffrey alberts our associate editor for science and member of the nidcap and science subcommittee has provided an enlightening summary of a target article from a recent publication. i hope the readers will be able to take home some useful ideas and help in reading some of the research around nidcap related concepts of care. enjoy reading this issue and i would like to hear your suggestions for articles and ideas to make the developmental observer your newsletter. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia table of contents editorial ...................................................... 1 abstracts .................................................... 2 a statement on state and feeding efficiency ................................................... 19 2019 inaugural world nidcap day ..... 20 nidcap care in the moment .................. 20 meetings and conferences .................... 21 nidcap on the web ................................ 23 abstract edition kaye spence, am 2 • 2019 • developmental observer challenges and barriers perceived by professionals in the implementation of the nidcap training in a middle income country charafeddine la, kurdahi badr lb, masri sa, abel nour gb, saad ab adepartment of pediatrics and adolescent medicine, american university of beirut, lebanon bdepartment of nursing services, american university of beirut, lebanon aims/purpose the purpose of this study is to describe the experience and challenges faced during nidcap training and implementation in a middle income country. the research questions were the following: 1) what are the barriers and challenges perceived by professionals during nidcap training and implementation? 2) what is the staff's perception regarding the nidcap’s impact on infants’ well-being, parental participation and working conditions in the unit? methods design: this is a cross sectional survey with descriptive design. setting: the study is carried out in a level iii neonatal intensive care unit in a middle income country for two months. participants: all nurses and physicians (50) who worked in the nicu for at least one year prior to and during the implementation of nidcap training were invited to participate using an online questionnaire. the questionnaire: the questionnaire was adapted from a previous swedish study; it has been used previously to survey staff opinion after nidcap implementation in several european countries. the questionnaire is based on the theory of planned behavior (topb); it includes 19 questions that measure the perception of staff, and is divided into five factors: attitude (8 items), perceived behavioral control (4 items), subjective norm (4 items), intention (2 items) and behavior (1 item). the items are formulated as statements using a five point likert scale ranging from 1 (totally disagree) to 5 (totally agree); another six related questions were added to monitor the process of nidcap implementation. questions related to participants’ characteristics and open ended questions were formulated to explore the staff experiences during the nidcap training implementation. procedure: after institutional review board approval his participants were invited to answer an anonymous online survey after being briefed about the study. statistical analysis: the statistical package for social sciences (spss), version 24 will be used for quantitative analysis. mean scores and 95% confidence intervals of the means will be calculated for the 19 items measuring the impact of nidcap on nicu conditions. results/findings the institutional review board approval has been secured. the questionnaire was adapted and piloted by five health care professional for clarity of content and applicability to our setting. they stated the tool is simple, easy to use and applicable to our setting; the language is clear and the content is understandable. no modifications to the existing questions were made. additional questions were added as described above. analysis will be done after completion of the survey. results will be compared amongst the different participants’ based on their demographic characteristics. the content of the open ended questions will also br analyzed. conclusion there is limited research exploring challenges faced by nicu nurses during the implementation of nidcap training in a middle income setting. this study will be the first to describe nurses’ perception regarding the impact of nidcap training on infant well-being, parental participation and staff development. understanding barriers in this particular setting of an arabic speaking country will help translate nidcap theory to practice in other settings similar to ours. findings would serve as grounds for us and others to promote and improve nidcap implementation in limited resource areas. a semi-annual publication of the nidcap federation international ©2019. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer developmental observer • 2019 • 3 aims/purpose the belgian government has always been very supportive concerning the implementation of individualized family-centered developmental care in newborn units. since 2012 the implementation of nidcap has been subsidized by the government. this project evolution demonstrated the benefit of nidcap on care practices1 and revealed the need for intermediate nidcap-based programs.2,3 this requires facilitation of nidcap implementation in newborn intensive care units (nicus) on the one hand, and development of programs adapted to the reality of intermediate newborn care units on the other hand. these findings matched the observations of the brussels nidcap training center. for a couple of years, a group of belgian nidcap professionals worked on an intermediate developmental care program. this program, called cle (compréhension du langage de l’enfant), was finalized three years ago after consulting other nidcap trainers. it is similar to the family and infant neurodevelopmental education (fine) program. the belgian federal government funds nidcap, fine and cle training in belgium. methods two questionnaires were conceived: • the first was designed for cle trainees and evaluates training, impact on caregiving, collaboration with families, and the trainees’ feedback on implementation in the newborn unit. • the second questionnaire was designed for parents and evaluates parent satisfaction with the guidance received, and the impact on parent involvement in decision-making and their ability to understand their baby. results in belgium, 11 hospitals received financial support for cle training. between october 2017 and june 2018, 34 caregivers started the cle program and 32 trainees completed the training in six hospitals. • 97% indicated the cle training has induced a lot of changes in the way they take care of babies. • 97% indicated training led to changes in the way they work with families. • 100% said the training helped them to question their own practices. • 97% said the training helped them to reflect on unit care practices. • 97% are satisfied with the training quality. • 94% indicated the training met their expectations. 42 questionnaires were completed by parents. • 95% indicated the cle program helped them to better understand their baby. • 93% felt encouraged to take part in decision-making. • 95% thought the cle program is helpful to parents. conclusion the cle program promotes the practice of family-centered developmental care. it meets professionals’ and parents’ expectations. an ongoing assessment of the evolution of developmental care practices in belgian hospitals carried out by the authorities, should highlight the impact of this training on future results at the national level. the cle program does not replace formal nidcap training but can help prepare units for the training as well as reduce the gap between practices carried out by nidcap certified professionals and the rest of the team. it meets the needs and specificities of level 2 newborn units in belgium. references 1. van herreweghe i, druart d, janssens k, clercx a, claesen m, tackoen m. a healthcare policy aiming to optimize parent–baby bonding in hospitals: the belgian example. revue de médecine.périnatale. 2016; 8(3):133-40 (in french). 2. als h. program guide – nidcap: an educational training program for health care professionals. nidcap federation international. 2015. retrieved from http://nidcap.org. 3. als h. toward a synactive theory of development. promise for the assessment of infant individuality. infant mental health journal. 1982; 3:229-43. evaluation of “cle” an intermediate family centered developmental care program based on the theoretical concept of the newborn individualized developmental care and assessment program (nidcap) druart da, grevesse lb, janssens kc, tackoen ma, van herreweghe ia anicu st pierre university hospital, brussels nidcap® training center, brussels, belgium bservice public fédéral santé publique, sécurité de la chaîne alimentaire et environnement, brussels nidcap® training center, brussels, belgium cservice public fédéral santé publique, sécurité de la chaîne alimentaire et environnement, uz leuven, belgium training center 4 • 2019 • developmental observer online video-based supplement for assessment of preterm infant behavior (apib) and newborn individualized developmental care and assessment program (nidcap) education dyck na,b,c, tyebkhan jma,b,c, nykipilo aa,c a stollery children’s hospital b university of alberta c edmonton nidcap training centre canada (entcc), edmonton, alberta, canada aims in response to repeated requests for enhanced educational materials for nidcap and apib training, nidcap federation international (nfi) members were asked in october 2016 to share photos and videos for the creation of a photographic library. video offers several advantages over verbal or written communication and education, and has been shown to improve technical and non-technical neonatal resuscitation skills.1 the presentation of large amounts of information in a limited amount of space and time, simplifying complex/abstract concepts, demonstrating how concepts/subjects in motion relate to one another, engaging audience attention and retention of information are enhanced2; all these are educational goals of nidcap training. our experience of video-supplemented nidcap education concurs with these findings. thus, we have created an online video-based tool to supplement apib and nidcap education. our goals were to a) create this tool, b) present this work at the 2018 nidcap trainers meeting (ntm) for feedback from the nfi membership, and c) invite collaboration from the membership to expand this preliminary work. methods parents and staff providing care to nicu infants (n=21), at the stollery children’s hospitals, gave written consent for videotaping of caregiving interventions. a variety of caregiving procedures, (clinical examinations including the apib, diaper changes, needle sticks, procedures, etc.) were captured on video. videos reviewed by jmt and an were categorized according to synactive subsystems, (for the nidcap section)3 and systems, packages or summary scales (for the apib section).4 many video clips raised questions related to nidcap observations and/or apib examinations and scoring and were placed in a separate section, ‘platform for debate’. videos in the platform for debate section were linked to feedback forms to facilitate e-mail communication with the edmonton nidcap training center canada (entcc), so that nfi members can offer their perspectives and insights. all videos were uploaded to a password protected database and website. results/findings video captured more detail than transcription onto nidcap observation sheets. similarly, video of apib exams led to more detailed scoring, than the scoring based on examiner’s memory. the videos often provided a different view of the infant, comimage of the nascent homepage. pared to that of the observer, thus affording a more complete record of the infant’s behavioral patterns. the videos will be shown during our presentation at the trainers meeting. we invite discussion at the ntm regarding members’ feedback about the user-friendliness and utility of this resource and the possibilities of forming a working group to expand this work. conclusion and further plans we will continue to record and upload videos, and welcome others to submit videos for inclusion in this online learning resource. we anticipate this resource will be used by nidcap and apib trainers and trainees as a supplement to the nfi training manuals. we hope the “platform for debate” section will serve as a forum for collaborative discussion about the complexities of neurobehavioral observation and scoring. electronic resources support trainers and trainees to review and discuss the complexities of behavioral responses and apib scoring online which may shorten the time required for training. such resources also allow review of behavioral response patterns and corresponding apib scores not observed during formal training days. we hope the online communication channel of this resource will enhance the skills of all who strive to provide nidcap-based, individualized neurobehavioral care for infants in their nurseries. addendum: in discussion with senior author juzer tyebkhan, the nascent program has been recognized as a new teaching tool under the auspices of the nfi’s program committee. nascent is a promising new tool to support apib and nidcap training. developmental observer • 2019 • 5 background understanding early preterm infants’ strengths, vulnerabilities, thresholds to stress and disorganization, and behavioural state regulation is of great importance in view of the daily care in the nicu and stabilization of preterm infants. preterm infants display observable behaviours along three main systems: the autonomic, the motor and the state systems. these behaviours according to the nidcap method are coded and recorded on a score sheet based on naturalistic observation, performed with unaided eyes. aim the primary aim of the study is to check whether cardiorespirography (crg) and video recording of the motor behaviour may enrich the information derived from the nidcap observation. method we tested a neurophysiological approach to the three nidcap observation systems using a cardiorespiratory monitor available in all intensive care units and a time-synchronized video recording of the single motor behaviour of preterm infants. crg consists of recording heart rate (hr), heart rate variability (hrv), respiration rate, and morphology of the respiration curve and oxygen saturation curve. time synchronized video recording of the single movement patterns (general movements, startles, tremors, twitches, myoclonic jerks, stretches, trunk arching, isolated arm and leg movements, and eye movements) was performed and compared with the crg data. from the four main behavioural state parameters (eye movements, body movements, hrv, type and morphology of respiration), we depicted the behavioural state profile. the nidcap observation of the infant was also simultaneously performed. subjects two hours of crg and video recording were performed in eight healthy preterm infants from the age of 27 weeks postmenstrual age (pma) during a nidcap observation. body weight at birth ranged from 635 grams to 900 grams. the mean gestational age at the time of crg recording was 31.5 weeks pma, varying from 28 to 34 weeks pma. preliminary results autonomic system: single isolated acute episodes (short apnea, bradycardia, oxygen desaturation) were present in all eight newborn infants, with various incidence and severity. all had a spontaneous resolution without external intervention. vagal tone (derived from the hrv curve) seemed to be well differentiated and age-adequate with different amplitude and cycles per minute in active sleep (as) and quiet sleep (qs) in five infants only. motor system: startle and twitches were seen only in qs whereas general movements, tremors, stretches, myoclonic jerks, trunk arching, and isolated arm and leg movements were predominantly seen in wakefulness and as. a normal quality of gms (n gms) was seen in five infants but a poor repertoire gms (pr gms) was observed in another three preterm infants. state system: the state profile showed a clear behavioural state organization and cyclicity in six infants. in two infants whose pma was less than 30 weeks, the state organization was hardly recognizable and indeterminate sleep prevailed. conclusions crg and synchronized video recording of the spontaneous and interactive behaviour of the preterm infants add extra information to the nidcap observation and drives the attention of the staff to those signs of immaturity/instability that deserve further attention and care. behavioural language of preterm infants: cardiorespirography and video recording of motor behaviour as an integration of the newborn indiviualized developmental care and assessment program (nidcap) observation ferrari f, lucaccioni l, ori l, talucci g, cuomo g, bertoncelli n modena university hospital, italy references 1. skåre c, calisch te, sæter e, rajka t, boldingh am, nakstad b, niles de, kramer-johansen j, olasveengen tm. implementation and effectiveness of a video-based debriefing programme for neonatal resuscitation. acta anaesthesiologica scandinavica. 2018; 62:394-403. https://doi. org/10.1111/aas.13050. 2. hurtubise l, martin b, gilliland a, mahan j. to play or not to play: leveraging video in medical education. journal of graduate medical education. 2013; 5(1):13–18. http://doi. org/10.4300/jgme-05-01-32. 3. als, h. manual for the naturalistic observation of newborn behavior. nidcap federation international. 2006. retrieved from http://nidcap.org. 4. als h, lester b, tronick e, brazelton b. manual for the assessment of preterm infants’ behavior (apib). nidcap federation international. 2006. retrieved from http://nidcap.org. 6 • 2019 • developmental observer aims/purpose the value of supporting neurodevelopmental outcomes by reducing stress and noxious stimuli in the nicu has been established in the literature over the past 20 years.1,2 developmental care and its application in the clinical setting is reported as inconsistent, yet there is no literature exploring neonatal nurses’ perceptions of developmental care and its application within the australian context. we undertook this survey to gauge the current practices across australia as part of a planning exercise for future neurodevelopmental care (ndc) training and implementation of nidcap. methods the survey was modified from a tool exploring neonatal nurses perceptions of family centered care and developmental practices in the united states of america.3 the modified survey consisted of thirty six questions exploring nurse’s personal perceptions and beliefs relating to family centered care, developmental care and skin to skin practices. additional questions relating to ndc education attendance were included by local researchers. the survey was distributed via the online qualtrics© platform to seven hundred and eighty three (n=783) specialty neonatal nurses in australia. results one-hundred and seventy three (n=173) nurses completed the survey with a 22 percent response rate. statistical analysis of the data utilised fishers exact test for association and unadjusted odds ratios. statistically significant associations were demonstrated for: place of employment (nursery versus combined neonatal intensive care/nursery unit) with combined units associated with increased support for open visiting hours (p=0.023) and skin to skin holding (p=0.009). supportive positioning (p=0.026) and recognition of the influence of the nicu layout/design (p=0.055) was also positively associated with combined units. respondent post graduate education levels were associated with increased recognition of the influence of the nicu environment (p=0.025). whilst lower levels of agreement (not statistically significant) were seen in all groups relating to parental involvement in care, and support of peers or the multidisciplinary team to facilitate skin to skin holding. differences were noted between rural (n=21) and metropolitan (n=150) respondents access to ndc education. seventy one (71) percent of ndc training for rural respondents occurred outside their hospital. with rural center respondents two times more likely to have completed education greater than six months ago (p=0.005). of concern the majority of respondents (64%) who had attended education in the past two years had received less than one hour of ndc education. with eight percent indicating they had never attended ndc education. conclusion respondents in this study demonstrated high levels of support for the concept of ndc. in the context of this survey, location, place of employment and level of education were identified as influencing the application of ndc components. given the nidcap community’s role in providing educational and consultative support in the nicu and special care nursery settings to ensure effective delivery of neurodevelopmentally supportive, individualized, and family-centered care understanding the potential influence of location and country specific factors is essential. exploring the unique geographical differences seen within the global healthcare setting can ensure context specific needs are met when implementing ndc education programs including nidcap. references: 1. d’agata al, sanders mr, grasso dj, young ee, cong x, mcgrath jm. unpacking the burden of care for infants in the nicu. infant mental health journal, 2017; 38:306–17. 2. spence k. historical trends in neonatal nursing: developmental care and nidcap. the journal of perinatal and neonatal nursing 2016;30:3:273-76. 3. hendricks-muñoz kd, louie m, li y, chhun n, prendergast cc, ankola p. factors that influence neonatal nursing perceptions of family-centered care and developmental care practices. american journal of perinatology 2010;27:3: 193-200. australian neonatal nurses' perceptions of neurodevelopmental care griffiths na, galea ca,b, psaila ka,c a grace centre for newborn care, the sydney children’s hospital network, westmead, australia b cerebral palsy alliance, allambie, australia c western sydney university, parramatta, australia developmental observer • 2019 • 7 aims to describe the foundations necessary to develop a newborn intensive care unit (nicu) training and staff development plan that will effectively support the changes in environment and care required for successful implementation of developmental care in the nidcap model.1 to determine the research method which is most appropriate and the abilities that professionals need to implement nidcap in the nicu. the aim of this presentation is to focus on action research, reflection, and critical thinking as cornerstones of nidcap implementation. methods review of literature and results of author’s previous grounded theory qualitative research on critical thinking process.2 results nidcap is an evidence based model that focuses on system change.1 a change would require the acceptance of new ideas or a new structure. action research is methodologically flexible to the point that it encourages methodological triangulation/ pluralism approaches. the process seeks to have full engagement by researchers and participants. the process is truly collaborative. an action or change is the focal point of the process. the decision to implement the action or change is in the hands of the stakeholders. the conclusion and subsequent action must reflect the collective thinking of the group. early work is attributed to lewin, a social psychologist, who is cited frequently as the first person who coined the term action research. simplistically, lewin said that for a change to occur, individuals would need to unfreeze—give up their ideas about something or give up the dominant structure.3 they would then need to change. an important characteristic of action research is the empowerment of others. change may come in the form of individual or group empowerment, greater community capacity to solve shared problems, or transformed organizational structures. an important part of the change or action phase of the research process is reflection. data recorded during reflection are important contributions to the theory that emerges from the action research study.4 reflection is a very important skill for professionals within the nidcap model. it is a skill used in two contexts during events and after them. it involves the use of decision making and evaluation. reflection is a process whereby experience is examined in ways that give meaning to interaction; interaction and engagement are very important components of the nidcap model. reflection is most closely associated with human interactions and especially clinical events too. some reasons why reflection is important in nursing and in helping to implement nidcap in the nicu are: correcting practice, understanding self; others; professions, and challenging assumptions. there are two types of reflection: in action and on action in three levels: superficial, medium, and deep.5 one of the most popular models of reflection is gibbs’ model.6 in the nidcap model, developmental specialists need this ability for writing journal pages on his/her observation of premature and caregiver behavior and critical thinking, reflection, and action research as cornerstones of nidcap implementation hasanpour m, kakavand a school of nursing and midwifery, tehran university of medical sciences, tehran, iran. elements of action research method gibbs, g. (1988). learning by doing: a guide to teaching and learning methods 8 • 2019 • developmental observer to foster good relationships with other staff, as well as the infant’s family. reflection is a subset of critical thinking and one that is used in close association with experience. critical thinking is another cornerstone of nidcap implementation. according to the results of qualitative grounded theory research in iran, critical thinking is the art of thinking and the mental challenge of how you are thinking. it is an essential concept, a fundamental ability and necessary means for human evolution and the overcoming of the problems of life in society, workplace and education. it is also an essential ability to achieve self-efficacy, autonomy and professional development.7 decision making, leadership and ethical practice are all founded upon an ability to think critically. we use critical thought to select resources, to utilize knowledge and to evaluate evidence. traditionally, our thinking has been designed for routine, habit, automation and fixed procedure. but the problems we now face, and will increasingly face, require a radically different form of thinking, thinking that is more complex, more adaptable, and more sensitive to divergent points of view.8 the ability to think critically is considered an essential educational outcome for today’s college graduates9 and necessary to nidcap implementation. conclusion the goal of the nidcap model is to bring about a shift from protocol-based to strategic process thinking and from task-oriented to relationship-based care. to achieve these goals and implement nidcap, there is a need for professionals to be familiar with three cornerstones including: action research, reflections and critical thinking. it is recommended that medical and nursing schools focus on special training programs to improve these abilities in students, since creating behavior is easier than changing behavior. also, enhance these abilities in nicu nurses and medical staff through continuing education workshops before and during nidcap implementation. references: 1. als, h. program guide newborn individualized developmental care and assessment program (nidcap). ©nidcap federation international, 2015, rev 31 may 2018. 2. hasanpour m, oskouie f, salsali m.(2007) the process of critical thinking in iranian nursing education: a qualitative research. http://www.criticalthinking.org/pages/29th-conferenceconcurrent-sessions/868. 3. speziale & streubert, h. (2011). qualitative research in nursing: advancing the humanistic imperative. 4. brown, l. d., & tandon, r. (2008). action research, partnerships and social impacts: the institutional collaboration of pria and idr. in p. reason, & h. bradbury (eds.), the sage handbook of action research: participative inquiry and practice (2nd ed., pp. 227–234). los angeles: sage 5. price b. and harrington a. (2010).transforming nursing practice: critical thinking and writing for nursing students. learning matters ltd.co.uk. 6. dye, v. (2011) ‘reflection, reflection, reflection. i’m thinking all the time, why do i need a theory or model of reflection?’, in mcgregor, d. and cartwright, l. (ed.) developing reflective practice: a guide for beginning teachers. maidenhead: mcgraw-hill education (pp. 217-234). 7. elder l. and paul w r. (2002).critical thinking. new york, pearson education, inc. 8. emerson j r. (2007) nursing education in clinical setting. mosby, elsevier co, united state of america 9. current project underway at tehran university of medical sciences (tums) developing critical thinking of nicn students based on the practive of reflection. aims for premature and full term infants who need help from a ventilator for breathing, it can be difficult to hold the infant skinto-skin and often depends on the nurses who are present at the time. lying skin-to-skin is a way to treat premature babies. the specific aims of this project were: 1. to increase the opportunity for skin-to-skin contact for as many infants as possible, as early as possible, including those intubated. 2. to develop a formal guideline: how to move the baby from bed/incubator skin-to-skin with parents in a safe way to help the families, nurses and physicians. methods the literature recommends disconnecting the intubated infant when moving the infant. the project set out to show that moving an infant to their parent for skin-to-skin while still connected to the ventilator is possible. a literature review was done, and based on that, plus many in-depth discussions with nicu staff, a set of procedures and guidelines were developed. the steps and procedures were documented with photographs showing how simply and beautifully one can move an infant from bed/incubator to their parent. the guideline: how to move the baby from bed/incubator skin-to-skin with parents in a safe way was completed in two years, and the nurses and doctors work together to use it and make skin-to-skin a reliable part of the infant’s treatment process. conclusion skin-to-skin care is an important component of nidcap care recommendations and a way to strengthen the family centered care. with the development of the guidelines on how to safely move intubated infants into skin-to-skin positioning, the unit now has the opportunity to offer skin-to-skin holding to all children in the unit. how to move a ventilated baby from bed/incubator to skin-to skin in a safe way hoeeg j neonanalklinikken, rigshospitatet copenhagen, denmark developmental observer • 2019 • 9 aims the belgian federal government promotes family centered developmental couplet care nationally.1 since 2012 the federal public services (fps) has encouraged hospitals to train their medical and nursing staff in developmental care (dc) through educational contracts. belgian hospitals with such an educational contract are offered financial support and four free dc conference days annually. moreover, the fps assigned two dc coordinators to visit these neonatal units. from 2015 till 2017 nicus training their staff in newborn individualized developmental care and assessment program (nidcap®) received financial support by the federal government. in june 2017, the fps began subsidizing dc training, specifically family infant neurodevelopmental education (fine) and compréhension de langage de l’enfant (cle) in neonatal units had not didn’t receive financial support up to that point. the objectives of this project are: • to evaluate the impact of the educational contract on the implementation and evolution of dc practices • to assess the effect of nidcap® professionals working in the neonatal unit on dc practices methods 58 out of 61 hospital sites with an educational contract completed a self-evaluation of their dc practices in the period of 2016-2017. the results of the questionnaire were analyzed in a descriptive manner. a semi-quantitative analysis was then performed for which the institutions received a score on a scale of 1 to 10 regarding a specific item in order to be able to weigh their respective importance on dc practices. the questionnaire comprised five scales: “environment”, “bed and sleep”, “care practices”, “feeding” and “couplet care”. the sum of the obtained scores from the five scales were calculated with a maximum score of 100. with these figures the nicus and level ii units are able to situate their positions set against the median value. results nicus scored significantly higher than level ii units on the implementation of dc practices, in all scales but “feeding” (environment, (z=2.1804, p=0.0292), bed and sleep practices (z=2.0135, p=0.0441), care practices (t(49.08)=-5.43, p<0.0001), couplet care (z=2.0966, p=0.0360) and total score (t(56)=-3.22, p=0.0021). units employing nidcap® professionals scored higher. significant differences were found between teams with and without nidcap® professionals (bed and sleep (z=2.8321, p=0.0046), care practices (t(56)=2.94, p=0.0047), feeding (t(56)=2.07,p=0.0426), couplet care (z=2.1149, p=.0344 and total score (t(56)=3.22, p=0.0021) but not on the “environment” scale. a small but significant correlation (r=0,389, p= 0.0019) was found for the number of nidcap® professionals working in a unit and the scores for dc practices. the more nidcap® certified personnel working in a unit, the more dc practices were implemented. between 2014-2017, in the 35 hospitals that participated every year, a distinctive positive evolution of dc practice was observed. the total score average increased with 14 points. discussion taking bias into account (self-evaluation, sample size, lack of controls), these results are merely an indication of the invested work in dc within these neonatal units. nicus apply more dc practices than level ii units and the recruitment of nidcap® professionals resulted in more dc practices. nevertheless, this project has allowed all the involved units to identify their relative positions within the dc project and use this information to grow. moreover, based on the quantitative data, the dc project has both illustrated the units’ evolution as well as highlighted areas of improvement. conclusion it is important to continue this project and to incentivize more units to join in or advance dc practices. for a more thorough evaluation of this project, another study is recommended that includes more nidcap professionals and a control site. the creation of a national label in dc will be taken into consideration. references 1. van herreweghe i, druart d, janssens k, clercx a, claesen m, tackoen m. a healthcare policy aiming to optimize parent–baby bonding in hospitals: the belgian example rev. méd. périnat. 2016; 8:3:133-40 (in french). advancement of promoting developmental care in belgium janssens k, grevesse l, clercx a, claesen m, haelterman g federal public services (fps) 10 • 2019 • developmental observer newborn individualized developmental care (nidcap) is the gold standard of early intervention training. unfortunately, despite intense efforts to disseminate this program, the training is not accessible to a large proportion of neonatal professionals due to high costs, duration of the training, and supportive systems organization. aims/purpose to offer different types and levels of training for neonatal professionals. methods training programs have been selected if the intervention is cuebased and family-centered, has an acceptable level of evidence and is in agreement with the nidcap philosophy. the brest training center is offering: introduction to patientand family-center developmental care (two days) created by nathalie ratynski and jacques sizun in 2000. family and infant neuro-developmental education1 (fine) (level ii: practical skills) created by nikk conneman, monique oude reimer, esthervan der heijden and inga warren (12 weeks) the support of feeding for fragile infants (soffi)2, created by erin ross and kathleen philbin (two days) the newborn behavioral observation (nbo)3 (two days) a clinical relationship-building tool derived from the newborn behavioral scale (nbas, yvette blanchard as trainer) the infant behavioral assessment and intervention program (ibaip)4, (three one-week sessions during one year) created and trained by rodd hedlund (part of a randomized controlled trial) results/findings short training programs could be considered as an introduction to the nidcap training; thousands of professionals from french-speaking nicus (level ii or iii), maternity units or follow-up clinics or private medical offices have been trained with a high satisfaction level; this catalogue offers an opportunity to reach people working outside the level iii nicus; and short courses trainers could be future candidates to become nidcap trainers conclusion this strategy participates to the financial stability, the independence and the sustainability of the brest nidcap training center. references: 1. www.bliss.org.uk/health-professionals/training-and-events/the-fine-programme 2. cross, es, philbin mk. supporting oral feeding in fragile infants: an evidence-based method for quality bottle-feedings of preterm, ill, and fragile infants. journal of perinatal neonatal nursing 2011; 25(4): 349–359. 3. barlow j, herath ni, bartram torrance c, bennett c, wei y. the neonatal behavioral assessment scale (nbas) and newborn behavioral observations (nbo) system for supporting caregivers and improving outcomes in caregivers and their infants. cochrane database systematic reviews. 2018;3:cd011754. 4. verkerk g, jeukens-visser m, koldewijn k, van wassenaer a, houtzager b, kok j, nollet f. infant behavioral assessment and intervention program in very low birth weight infants improves independency in mobility at preschool age. journal of pediatrics 2011;159(6): 933-8.e1. nidcap is theory-guided, relationship-based and systemoriented. according to gilkerson & als, “changes in the larger system affect the dynamics within the smaller unit”.1 therefore it appears important to act at a national level to support nidcap dissemination. aims/purpose to describe strategies developed at a national level in france during the last decade to support developmental care and nidcap implementation. methods the goals were: 1. to create guidelines on family-centered developmental care; 2. to disseminate evidence-based data; 3. to train future neonatologists to the basis of early intervention; 4. to create a special partnership with national parents’ groups 5. to act at a political level to change national laws. diversification of developmental care trainings: how and why? ratynski na, minguy sa, olivard i, sizun jb anidcap trainer, bcenter director, brest nidcap training center, brest, france. working on the national system: the french experience sizun ja, bouvard cb, zana ec, zores cd, kuhn pe, casper cf, zaoui cg, thiriez gh, audéoud fh , guillois bi abrest; bsos prema, cparis port-royal; dstrasbourg, etoulouse, fvalenciennes, gbesançon, hgrenoble, icaen developmental observer • 2019 • 11 results/findings the groupe de reflexion sur l’environnement en néonatalogie (green), a special interest group from the société française de neonatalogie (sfn), including two parents groups (sos prema and ciane), is publishing texts on the parents’ role, the optimal nicu environment, postural support, skin to skin. a french book “soins de développement en néonatalogie: de la recherche à la pratique” edited in 20142 is the reference for professionals and trainees. a one-day session on developmental care has been integrated in the curriculum of pediatric and neonatal training nidcap professionnals participated in the “assises de la prématurité”, a special event created by the sfn, sos prema and politicians and in the study group “prematurity and vulnerable newborns” at the assemblée nationale. nidcap professionals are participating in the training of local and national parents’ representatives. conclusion active participation of neonatologists, implication of the national scientific society, close collaboration with parents group and contacts with politicians have created a positive climate for nidcap dissemination and implementation in france. references 1. gilkerson l, als h. role of reflective process in the implementation of developmentally supportive care in the intensive care nursery. infants and young children. 1995;7:20–28. 2. sizun j, guillois b, casper c, thiriez t, kuhn p. soins de développement en période néonatale de la recherche à la pratique 2014, publisher lavoisier msp (in french) newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 12 • 2019 • developmental observer background/significance over 15 million premature infants are born annually around the world. it has been optimistically yet incorrectly proposed, that healthy preterm infants without major complications eventually catch-up developmentally to term infants. research shows these preterm infants remain increasingly disadvantaged on many neurodevelopmental outcomes. parental touch, especially during skin-to-skin contact (ssc) has the potential to reduce the adverse consequences of prematurity. ssc is an evidenced based strategy that increases parental proximity and provides an interactive environment known to enhance infant physiologic stability and affective closeness between parent and infant. evidence suggests ssc activates oxytocin release in mothers, fathers and infants. relevance to nidcap this study provides evidence to support developing relationships between mothers, fathers and premature infants. early responsive and synchronous contacts with parents may positively influence cognitive and developmental outcomes for premature infants. parental engagement creates an opportunity guide future research on how to increase parents’ active participation with their premature infants. aims/purpose the purpose of this research study was to examine bio-behavioral mechanisms of ssc for parents and preterm infants. specifically, is there a relationship between salivary oxytocin and cortisol levels and parental engagement as measured with the parent risk evaluation on engagement model and instrument (preemi)? methods: this randomized cross-over design study used a 3-day timeframe conducted in the newborn intensive care unit (nicu). twenty-eight stable preterm infants (30 0/7 – 34 6/7 weeks gestational age between 3 -10 days old) and their mothers and fathers participated. after informed consent, each triad was randomly assigned to one of two sequences: maternal-ssc on day 1 and paternal-ssc on day 2; or paternal-ssc on day 1 and maternal-ssc on day 2. infants' and parents’ saliva samples for oxytocin and cortisol were collected 15-min pre-ssc, at 60-min during-ssc, and 45-min post-ssc. parental engagement was measured using the preemi just prior to hospital discharge. results data analysis was performed using ibm spss version 18. data were not normally distributed; therefore pearson’s correlation was used to measure the relationship between salivary oxytocin and cortisol levels with maternal and paternal engagement composite scores. multivariable linear regression models were used to model the effect of maternal and paternal oxytocin and cortisol levels independently on engagement composite scores, adjusting for infant oxytocin and cortisol levels respectively. there was a significant negative correlation between paternal oxytocin levels and paternal engagement (r= -0.43; p-value = 0.03) and a significant negative correlation between infant oxytocin levels and maternal engagement (r= -0.54; p-value = 0.004). there was no significant interaction between maternal oxytocin or maternal cortisol levels and maternal engagement scores. however, the adjusted linear regression model showed that as infant oxytocin levels increased maternal engagement scores significantly decreased (β: -0.04; p-value= 0.01). the unadjusted linear regression model showed that as paternal oxytocin levels increase paternal engagement scores significantly decrease (β: -0.14; p-value = 0.03). linear regression, adjusted for infant oxytocin and cortisol levels, showed that as paternal oxytocin levels increase there was a significant decrease in paternal engagement (β: -0.16; p-value = 0.03) and as paternal cortisol levels increased there was a significant decrease in paternal engagement (β: -68.97; p-value = 0.05). conclusions salivary oxytocin and cortisol levels significantly influence parental engagement. oxytocin facilitates social sensitivity and attunement necessary for developing relationships and nurturance for emotional and physical health. defining parent engagement facilitates identification of parent-risks and needs for intervention to optimize outcomes for premature infants. statement of financial support the authors have no conflict of interests to report. this research was supported by funding from: national association of neonatal nursing, american nursing foundation (eastern nursing research society), sigma theta tau (mu chapter), and the university of connecticut school of nursing (toner fund). reference vittner d, butler s, smith k, brownell e, samra h, mcgrath j. parent engagement correlates with parent and preterm infant oxytocin release during skin-to-skin contact. advances in neonatal care 2019;19(1):73-79. doi.10.1097/anc.0000000000000558 skin-to-skin contact activates oxytocin release and correlates to parent engagement vittner da,b, butler sc,d, smith kb, makris na, samra he, mcgrath ja auniversity of connecticut, school of nursing, storrs, ct, usa bconnecticut children’s medical center, hartford, ct, usa cboston children’s hospital, boston, ma, usa dharvard university, medical school, boston, ma, usa esouth dakota state university, brookings, sd, usa developmental observer • 2019 • 13 aims/purpose in the nicu, environment sounds and noise can be challenging for the preterm and/or sick newborn baby. reducing noise to provide an environment with appropriate and meaningful auditory experiences such as parents’ voices is important. elimination of loud noises will furthermore benefit the families and staff. in 2016, the nicu at rigshospitalet copenhagen university hospital, collaborated with soundear™, a company that develops noise-meters for indicating and collecting noise levels, to develop a software program that was appropriate and easy to use. the aim was to support reduction in noise levels at the nicu through different layers of nudging: the noise meters with displays should help staff and families become aware of their own noise levels and change their noisy behavior. the software helps staff become aware of when and where noise levels are critical and something should be done differently. the software sends out noise reports on a weekly basis via email to key staff members, who use these reports as a basis for further discussion about noise at staff meetings. methods inspired by participatory research methods, soundear co-created the software program for hospital use with a group of staff from the nicu. noise-meters were installed in all rooms. half of the noise meters were anonymous white boxes, which solely measure and collect noise levels. the other half of the noise meters also have a display with an ear, that lights up green, yellow or red, indicating the current level of noise in the room. all the noise meters transfer noise measurement data wirelessly to a central computer, where it is accessible to staff through software. after having the soundear devices in the nicu for a few months, questionnaires about the perceived unit noise levels, and whether the soundear devices seemed to have changed anything, were distributed among the staff. results/findings it was determined that only a few staff members should be responsible for driving to the hospital to measure noise reduction rather than all staff members. software-generated data was used to gather insights for the staff to discuss at weekly meetings. these insights turned into auto-generated noise reports being sent to key staff members to be discussed with staff. fourteen staff members, primarily nurses, answered the questionnaire, with 78.6 % reporting that the soundear devices had made them more attentive to noise levels. the same amount reported to have changed some of their behaviour because of the soundear devices. the change that most staff members reported to have made, was when unpacking syringes and other types of medical equipment outside of patient rooms, because they noticed that the ripping of plastic made unnecessary noise around the babies. others reported lowering their voices and lowering the noise level of alarms as changes they had made after the installation of the soundear devices. several staff members also reported to have seen an increase in parents’ attention to noise levels, and that they commented on noise to other visitors and siblings, thereby spreading the attention to noise. conclusion a useful software program was developed to help strive to reduce unnecessary noise and promote appropriate surroundings in the nicu. generation of daily or weekly reports of sound levels in each room may be used to promote and evaluate targeted noisereduction activities. reducing noise through awareness in the nicu weis j, haaber j rigshospitalet copenhagen university hospital, copenhagen, denmark the 29th annual nidcap trainers meeting members of the board of directors and delegates in porto, portugal 14 • 2019 • developmental observer introduction very preterm infants (vpi) are exposed to atypical visual stimuli in the hospital. their visual system was shown to be mature enough to allow them to physiologically react to ecological visual stimuli in the nicu from 28 weeks post-menstrual age (pma).1 these stimuli have also been shown to induce sleep disruption.2 however, little is known about their behavioural responses to light level changes of different amplitudes, encountered in the hospital environment. aims we aimed to evaluate the behavioural responses of vpis to light level changes of different intensities. our goal was also to follow longitudinally the development of these responses in vpis until term corrected age and to compare them to the responses of fullterm newborn infants. methods we included 25 term newborn infants and 26 vpis at strasbourg university hospital (france) from september 2016 to june 2017. the vpis were studied at three distinct pma: 32, 36 and 40 weeks pma. infants were recorded during sleep when they were lying on their back, in a nest. three different light stimulations (34, 100 and 300 lux above basal light level) were presented in a random order for a duration of 5 seconds. video recordings were centred on the infant's face to appreciate their behavioural responses assessed by the nfcs (neonatal facial coding system) score, reduced to four items, in 10 seconds epochs.3 the maximum nfcs score over the period of 60 seconds post stimulation was retained and was compared to the nfcs score determined during the 10 seconds preceding the stimulation (t test). results/findings we observed a significant increase in the mean nfcs scores from the pre-stimulation period to the post-stimulation period, represented by the mean of maximal scores of post stimulation periods. this was noted regardless of the intensity of stimulation and whatever the pma (all, p<0.05). in preterm infants at 40 weeks pma, means nfcs score were significantly higher at 100 lux (t (36) = 2.9, p = 0.006) and at 300 lux (t (36) = 2.8, p = 0.009) compared with those following 34 lux stimulations: respectively 1.6 (+/1.0) and 1.6 (+/1.1) vs 0.72 (+/0.83) for 34 lux. we found this same difference at 32 weeks of pma. the average nfcs score to 34 lux stimuli was 1.2 +/0.9 versus 1.8 mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, april 29, 2017 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 even moderate visual stimuli leads to behavioural responses in term and preterm infants zores ca,b, vincent va, marchal aa, davy ma, astruc da, dufour ab, kuhn pa,c amédecine et réanimation du nouveau-né, service de pédiatrie 2, pôle médico-chirurgical pédiatrique, hôpital de hautepierre, centre hospitalier universitaire de strasbourg, strasbourg, france. blaboratoire de neurosciences cognitives et adaptatives, umr 7364 cnrs/université de strasbourg, strasbourg, france cinstitut des neurosciences cellulaires et intégratives, déterminants moléculaires de la douleur strasbourg, france developmental observer • 2019 • 15 +/0.9 at 100 lux (t (36) = 2.3, p = 0.02) or 1.9 +/0.9 to 300 lux (t (37) = 2.3, p = 0.02). the mean nfcs score was significantly higher at 32 compared to 36 weeks pma for a 100 lux light stimulation: 1.9 (+/0.8) vs 1 (+/1.1) (t (40) = 2.8, p = 0.04)). similar results were observed for a 300 lux light stimulation: 1.9 (+/0.9) versus 1.2 (+/1.2) (t (42) =2.0; p = 0.05). the main results are summarized in figure 1. conclusion even low-intensity visual stimulation leads to behavioural responses, measurable through scales evaluating pain and discomfort. this was present in all subgroups of infants, regardless of the level of immaturity of the newborn infants. the level of light stimulation and gestational age appeared to be the main determinants of the intensity of discomfort. all these results have clinical implications and support the need for better attention to light level changes during the hospital stay.4 references 1. zores c, dufour a, pebayle t, langlet c, astruc d, kuhn p. very preterm infants can detect small variations in light levels in incubators. acta paediatrics 2015;104:1005–11. 2. zore, c, dufour a, pebayle t, dahan i, astruc d, kuhn p. observational study found that even small variations in light can wake up very preterm infants in a neonatal intensive care unit. acta paediatrics 2018;107:1191-97. 3. grunau re, oberlander t, holsti l, whitfield mf. bedside application of the neonatal facial coding system in pain assessment of premature neonates. pain 1998;76: 277–86. 4. white rd. defining the optimal sensory environment in the nicu: an elusive task. acta paediatrics 2018;107: 1112-1112. figure 1. variation in nfcs score by population and intensity 3 2.5 2 1.5 1 0.5 0 3 2.5 2 1.5 1 0.5 0 3 2.5 2 1.5 1 0.5 0 3 2.5 2 1.5 1 0.5 0 preterm infants at 32 weeks pma preterm infants at 36 weeks pma preterm infants at 40 weeks pma term newborn infants 34 lux 100 lux 300 lux 34 lux 100 lux 300 lux 34 lux 100 lux 300 lux 34 lux 100 lux 300 lux mean nfcs scores during pre-stimulation periods are represented in blue and during post-stimulation periods in red. the vertical bars represent the standard deviation. *p <0.05, student's t test 16 • 2019 • developmental observer introduction very preterm infants (vpi) are exposed to atypical visual stimuli in the hospital. they are able to exhibit physiological and behavioural responses to ecological visual stimuli in the nicu from 28 weeks post-menstrual age (pma).1,2 however, little is known about their cortical responses to light level changes and the development of this cortical integration until term post-menstrual age (pma). aims we aimed to evaluate the cortical responses of vpis to light level changes of different intensities. our goal was also to follow longitudinally the development of the cortical integration of these stimuli in vpis until term corrected age and to compare them to the responses of full-term newborn infants. methods we included 25 term newborn infants and 26 vpi at strasbourg university hospital (france). the vpis were studied at three distinct ages: 32 (n=21), 36 (n=23) and 40 (n=21) weeks pma. two different light stimulations (100 and 300 lux above basal light level) were presented in a random order for duration of 5 seconds. oxyhemoglobin and deoxyhemoglobin changes were recorded by multi-channel near infrared spectroscopy (nirx®). optodes were positioned using the eeg 10-20 classification to explore the areas of interest.3 the first regions of interest were occipital (o) visual areas: oi (middle and superior occipital gyri), oii (inferior occipital gyrus and calcarine sulcus), pariétooccipital (po: middle occipital gyrus and angular gyrus). we also recorded hemodynamic changes in frontal areas (f: middle frontal gyrus) and prefrontal areas (pf: middle frontal gyrus and orbitary frontal gyri). after a specific pretreatment of the data we carefully rejected artifacts. oxyhemoglobin variations were analyzed from baseline (10 s) to 25 s post-stimulation by anova for repeated measure. results/findings a 100 lux stimulus triggered a significant increase in oxyhemoglobin (0.6 to 1.4 μmol/ l) in visual areas as early as 36 weeks pma (p <0.01). this response was also fully present in full-term infants but less present at 32 weeks pma. increases in oxyhemoglobin were also noted in frontal areas, but only in vpis at 40 weeks pma. all these results are shown in table 1. at term corrected age, the profile of responses of vpis and full-term newdevelopment of cortical integration of visual stimuli in very preterm infants zores c a,b, marchal aa, davy m a, pebayle t b, astruc d a, dufour a b, kuhn p a,c a médecine et réanimation du nouveau-né, service de pédiatrie 2, pôle médico-chirurgical pédiatrique, hôpital de hautepierre, centre hospitalier universitaire de strasbourg, strasbourg, france. b laboratoire de neurosciences cognitives et adaptatives, umr 7364 cnrs/université de strasbourg, strasbourg, france c institut des neurosciences cellulaires et intégratives, déterminants moléculaires de la douleur strasbourg, france table 1. cerebral activation in response to a 100 lux light stimulation in different groups the arrow shows the sense of variation of oxyhemoglobin; l: left; r: right developmental observer • 2019 • 17 borns were different in both occipital and frontal areas (p <0.05). a 300 lux stimulus triggered cerebral activation mainly in the frontal and prefrontal areas whatever the age of the infants. an increase in oxyhemoglobin was present at 32 weeks of pma in the frontal and prefrontal areas and in the occipital areas from 36 weeks of pma. an oxyhemoglobin decrease was also seen in some regions of interest. we present in figure 1 the responses measured in one occipital area at 40 weeks pma. conclusion cerebral hemodynamic responses to 100 and 300 lux stimuli were inconsistant but present in at least one visual area in full-term infants and as early as 36 weeks pma in vpis. at 32 weeks pma, variations of oxyhemoglobin were more inconsistant, more moderate and less diffuse. they were mainly found for higher intensities. the pattern of cortical activation for one stimulation was variable in the different age groups. we observed different profiles of oxyhemoglobin responses in term and vpis at 40 weeks pma. these results suggest a possible impact of premature birth and of the early visual environment on the developmental trajectory of the visual system with potential alteration of the neuronal network. these results support the need for better attention to light level changes during hospitalization.4 the long term effects of the early visual environment should be evaluated further. references 1. zores c, dufour a, pebayle t, langlet c, astruc d, kuhn p. very preterm infants can detect small variations in light levels in incubators. acta paediatrics 2015;104:1005–11. 2. zores c, dufour a, pebayle t, dahan i, astruc d, kuhn p. observational study found that even small variations in light can wake up very preterm infants in a neonatal intensive care unit. acta paediatrics 2018;107:1191-97. 3. kabdebon c, leroy f, simmonet h, perrot m, dubois j, dehaene-lambertz g. anatomical correlations of the international 10-20 sensor placement system in infants. neuroimage 2014;99:342–56. 4. white re. defining the optimal sensory environment in the nicu: an elusive task. acta paediatrics 2018;107:1112-1112. figure 1. cerebral responses measured in one occipital area (left oi) at 40 weeks pma after a 300 lux light stimulation variation of oxyhemoglobin (red line) and deoxyhemoglobin (blue line) 1.5 1 0.5 0 -0.5 -1 -1.5 -10 -5 0 5 10 15 20 25 aims the overarching goal of the project was to assess the need for, implement and evaluate the change process of bringing the nidcap approach to developmental care to newborn intensive care units (nicu) in ksa by: • implementing changes in the hospital culture to fully comprehend nidcap as a systematic framework to support newborns and their families; • supporting staff to appreciate the family as vital members of the nicu community and recognizing family involvement as essential for sustaining positive effects on physical, cognitive, and psychosocial development as well as to prevent or ameliorate complications of prematurity; • supporting the caregiving staff to understand the importance of skin-to-skin kangaroo care (kmc) to infant development and infant/parent relationships. background in saudi arabia, 264 hospitals provide tertiary nicu care to 64% of the population, which in 2017 included 277,431 live births, of which 3% were considered high medical risk prematurely born infants. nidcap was introduced in 31 ksa ministry of health (moh), maternal child health (mch) nicus. these units had essentially no previous exposure to developmental care except for a three month introduction from a us group from minnesota without consistent follow-up. changes of culture in implementation of developmental care (nidcap approach) cala b nicu department improvement program, moh, saudi arabia (ksa) 18 • 2019 • developmental observer methods for this project, nidcap introduction began initially in one hospital in riyadh in 2013; the ministry of health nicus were introduced in may, 2017. the introduction included the nidcap goals to change the culture of practice to one in which caregiving staff demonstrate attitudes, values, knowledge, and skills individualized to each infant’s developmental agenda and based on behavioral observation. discussions during the presentation included: shifting care from a task-oriented to an individualized care approach; eliminating the standard one hour per day parent visiting policy and supporting active participation of the family in caregiving. these concepts were novel, and described as ‘eye opening’ to the nursery caregiver representative from the ministry of health. subsequent training activities included: neonatal mini symposia offered to different regions, updates and orientation for health workers, visits and assessment using the nidcap nursery assessment manual, implementing mandatory developmental care competencies for nicu nurses and orientation to multidisciplinary staff, introductory training with fine level 1 to 79 nicu caregivers at investigator’s own nicu (the children’s hospital, king fahad medical city, riyadh) with plans to bring professionals to nidcap training. outcome of this work has already resulted in a change in the culture of care as shown by a move to implement developmental care, and the institution of a nicu improvement program within the ministry of health. the moh nicu improvement program oversees developmental care for premature infants in the nicu which will have a major impact on the future of newborns in ksa. the program supports standardizing nicu facilities according to nidcap principles; screening for hearing, critical congenital heart defects (cchd), retinopathy of prematurity (rop), and respiratory syncytial virus (rsv); vaccination; breastfeeding advocacy; free natural family planning (nrp) consults; s.t.a.b.l.e. (sugar, temperature, airway, blood pressure, lab work, emotional support) program course enrollment for nicu nurses and physicians; and monthly reports of key performance indicators (kpi) based on the vermont oxford network benchmarks. in support of this effort, the investigators have embarked on nidcap nursery certification from the nidcap federation international (nfi) and joined the nfi and the european foundation for the care of newborn infants (efcni) in the celebration of 2017 world prematurity day and international kangaroo care day. results/progress to date • policy development permitting and encouraging parents to have unrestricted access to their infant and to hold skin-toskin (kmc) is the most challenging part. this is related to culture sensitivity around clothing and modesty and in communicating the documented importance of kmc. • developmental care began in may 2017 with follow-up visits scheduled for twice a year. • one hospital successfully initiated kmc to their nursery during the first year of implementation. • three day courtesy visits were scheduled to hospital leaders of nurseries using the nidcap nursery assessment manual scoring tool. • orientation and lecture were made available to multidisciplinary staff of the hospital including nicu nurses and physicians. • recommendations based on the nursery assessment manual scoring, that indicated strengths and challenges, were discussed with multidisciplinary nicu staff with reassessment planned after 6 months. • orientation, awareness and lectures given introducing nidcap developmental care reached: o nicu nurses 1,337/2000, 66.85%; o nicu physicians 334/700, 47.71%; o multidisciplinary teams 905/6,500, 13.92%; o lecture, awareness, symposium and orientation 31/77, 40.25%; o hospital visits 31/35, 88.57%; o professionals from the 4 hospitals not visited due to critical area and culture, were however, identified and guided to introduce developmental care to their staff. conclusion the nidcap approach to developmental care necessitates a change of nicu culture which helps healthcare professionals and healthcare institutionsmost fully benefit from the impact of developmental care. developmental care improves the nicu culture and gives parents and families the opportunity to play a major role in the care of their newborns and itchanges the culture to fully comprehend how nidcap developmental care supports newborns and their families. call for expression of interest to join the editorial team we are calling for expressions of interest from nfi members to join the editorial team. we would like global representation. email senior editor kaye spence at: developmentalobserver@nidcap.org developmentalobserver@nidcap.org developmental observer • 2019 • 19 as every nidcap practitioner or student knows, a behaving infant continuously presents troves, if not torrents of observational information. the science and art of nidcap observations reside, in part, in the extraction of meaningful portions of these behavioral data. a recent report by griffith, rankin, and white-traut (2017) illustrates the principle that behavior provides a wealth of information. at times, there may be such a storehouse of riches that a database can be tapped for knowledge beyond that which inspired the original investigation! indeed, the present target article is such a “secondary analysis”. originally, there was conducted a large, randomized control study (rct) of a developmental intervention for preterm babies. for the present report the authors extracted quantitated observations made in the one-minute prior to the major manipulation that was being studied. from the data in that pre-trial period and in part of the feeding data, the present study was created. thus, griffith et al. examined "the relationship between behavioral states and oral feeding efficiency in preterm infants". with this secondary analysis, they were able to make some valuable contributions. i’ll discuss a few points that might be of interest to developmental observer readers. the end-point in their analysis was oral feeding efficiency, measured in ml/min. the results were taken from the first 10 min of the 30 min feeding period in the rct. they limited the interval for the measure to avoid contamination by fatigue in some of the fragile babies. babies were held and fed by bottle by the research nurse. this was part of numerous steps of careful standardization. from video recordings of the 1-min pre-test period, each baby’s state was independently encoded by two trained observers, blind to the purpose of the study; inter-observer reliability was excellent (> 98%). for each 15-second segment of observation, the dominant (> 8-seconds) behavioral state (e.g., alert, sleep, drowsy, crying states) was determined. from these data, the proportion of time spent in each state was quantified and then examined in relation to the baby’s feeding efficiency. the researchers used a couple of different “regression” statistics to analyze the results. these methods enabled them to determine whether there were statistically significant relations between singular and combined variables for each baby and that baby’s feeding. although these are all correlational measures (and we understand that correlations do not prove causation), the various levels of each behavioral state as well as different characteristics of the babies (e.g., age, weight, risk assessment scores, etc) were built into the tests. this greatly strengthened the interpretive power of the correlational results. the outcomes were clear: the more time a baby was in alert states in the minute before feeding, the greater the feeding efficiency. conversely, the greater the time spent in a sleep state in the pre-feeding minute, feeding efficiency was proportionately diminished. take a look at the paper: figure 1 shows that when a baby spends about 45 seconds of the pre-feeding minute in an alert state, feeding efficiency is about 50% greater than if they are in an alert state for 10 seconds! the authors were able to make some assertions concerning the meaning of their findings for nicu practice: careful assessment of infant behavioral state is vital for effective, developmentally-supportive feeding. avoid feeding when infants are sleeping; if a baby is in a drowsy state, use interventions such as sensory stimulation to help the baby transition to an alert state before attempting to feed orally. you will appreciate the value of nidcap observational skills in this context. it is worth noting that babies born preterm typically present a distinct “sleep architecture” that differs from that of term babies. young, prematurely born babies spend far more time in active sleep and, importantly, their development is marked by important changes in sleep-wake distributions as well as transitions between states. again, nidcap skills and sensitivities will serve you and the babies well for achieving superior support and care. there is more to absorb from the article; hopefully, this commentary is informative and will motivate you to read the full paper. you are certainly invited to discuss it on one of our forums. visit: https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5269441/ to access the full target article. target article: griffith, t., rankin, k., & white-traut, r. the relationship between behavioral states and oral feeding efficiency in preterm infants. advances in neonatal care, 2017;17(1), e12 – e19. a statement on state and feeding efficiency jeffrey r. alberts indiana university, nfi science committee, associate editor for science t h e s c i e n c e d e s k p ho to gr ap h by e m an ue l a ng el ic as developmental observer • 2019 • 19 https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5269441/ 20 • 2019 • developmental observer m arch 20, 2019 is the first annual world nidcap day. initiated by the nidcap federation international, world nidcap day is an opportunity to recognize and build awareness of the importance of providing nidcap care for hospitalized newborns and their families. hospitalized newborns represent new beginnings faced with uncertainty due to their preterm birth or a newborn illness. nidcap care is essential for their overall health and wellbeing. celebrate world nidcap day with us… • wear teal • promote nidcap and world nidcap day in your nursery, hospital and community • share photos/events on social media using #nidcap • #nidcappartneringwithfamilies and #worldnidcapday • illuminate landmarks in your area in the color teal watch www.nidcap.org for more details soon… waking up calmly with a parent’s gentle presence nidcap care in the moment world nidcap day developmental observer • 2019 • 21 the developmental observer is the official newsletter of the nidcap federation international. we would like to receive submissions from the membership on any topic related to nidcap work either training, experiences or on the broader issues that support our work. we will also consider creative works that reflect nidcap work. if you have an idea please let me know and we can work through the submission process. if english is not your first language we can help with some of the language issues. the developmental observer is an open access on-line newsletter available on the nfi website for members as well as other visitors to the site. it may also be distributed by other networks and lists. it is indexed and archived through scholarworks at indiana university, usa. copyright remains with the author. all articles are to be submitted to the senior editor kaye spence am via the email developmentalobserver@nidcap.org. you will receive acknowledgement of your submission. an editorial review process occurs and once complete you will be notified of publication of your article. article submission guidelines title of your article/story name of the author(s) and professional credentials organization and/or affiliation an email contact address and a whatsapp contact if available. submitted in ms word arial font– size 12 pitch double spaced number each page word length – 800 – 1500 words pictures 300dpi (please ensure you have permission to use and include a statement indicating this). diagrams, graphs and tables (embed in your document and send as a separate file) we would also like to receive 'letters to the editor' for publication. these can be between 50-150 words. developmental observer submission guidelines sheraton portsmouth harborside hotel portsmouth, new hampshire, usa contact jim helm on behalf of the nfi jimhelm27@gmail.com the 30th annual nidcap trainers meeting october 5-7, 2019 developmentalobserver@nidcap.org 22 • 2019 • developmental observer developmental observer the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org 2019 vol. 12 no. 1 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “great things are done by a series of small things brought together.”vincent van gogh greetings from the editor it is a pleasure to write this editorial as the senior editor of the developmental observer. i was excited to be the successful applicant and i hope to see the developmental observer continue to serve the members of the nidcap federation international (nfi). it is certainly one of the successful resources and i look forward to working with you the members in making it an interactive newsletter for all things nidcap and beyond. i come with a history of editing a journal, a publication record and facilitating writing workshops. so you can see i do like to see the written word and using visuals as a way of communicating information. i am working with an enthusiastic editorial team and i am sure together we will continue to meet your needs for an informative and resourceful newsletter. i would encourage you to submit stories about your work and experiences with nidcap (email to: developmentalobserver@gmail.com) as together we are a strong group making a difference to newborn infants and their families. we need to let the world know. an exciting direction for the developmental observer is to be indexed on scholarworks at indiana university, usa. this will be one of my goals in 2019 to ensure the back issues are archived and future issues easy to find for all who are interested. watch this space for more information. this issue includes the abstracts from the 2018 nidcap trainers meeting successfully held in porto, portugal. for those lucky enough to attend it was an informative and exciting meeting with the hosts excelling themselves with their hospitality. the abstracts included in this issue come from many countries such as australia, belgium, canada, denmark, france, italy, iran, kingdom of saudi arabia, lebanon, and the usa which demonstrates the global spread of nidcap work. you can read about a variety of educational initiatives and some exciting research of the sounds in the environment, care practices such as skin-to-skin care, as well as some innovative ways to support nidcap observations through video and observing babies. a new feature has been introduced in this issue. jeffery alberts from the nfi science committee has provided an enlightening summary of a target article from a recent publication. i hope the readers will be able to take home some useful ideas and help in reading some of the research around nidcap related concepts of care. enjoy reading this issue and i would like to hear your suggestions for articles and ideas to make the developmental observer your newsletter. kaye spence amsenior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia table of contentseditorial ...................................................... 1 abstracts .................................................... 2 a statement on state and feeding efficiency ................................................... 20 meetings and conferences .................... 21 nidcap on the web ................................ 23 abstract edition kaye spence am nidcap federation international board of directors and staff 2018–2019 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: deborahbuehler@comcast.net vice president dorothy vittner, rn, phd senior nidcap trainer director, carolina nidcap training center email: dvittner@wakemed.org treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary jean powlesland, rn, ms children’s hospital of university of illinois nidcap training center chicago, illinois, usa email: jpowlesl@uic.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center email: n.conneman@erasmusmc.nl mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk james m. helm, phd nidcap senior trainer email: jinhelm27@gmail.com dalia silberstein, rn, phd israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, md nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca björn westrup, md, phd director, karolinska nidcap training & research center email: bjorn.westrup@karolinska.se staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu http://nidcap.org/en/nfi-news/developmental-observer-the-official-newsletter-of-the-nfi/ developmental observer • 2019 • 23 nidcap on the web the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap training centers – facebook pages many of the training centers and nidcap groups have established their own facebook pages. these pages provide useful resources for members and by joining the groups and sharing the pages you are helping to spread information about nidcap. here are a few to get you started. if you know of others please send an email to developmentalobserver@nidcap.org and let me know for inclusion in the next issue. follow us on all of our social media platforms: like us on facebook follow our posts on pinterest watch our videos on you tube connect with colleagues on linkedin read and participate on our nidcap blog follow us on twitter http://nidcap.org/blog/ sandra.kosta@nidcap.org developmentalobserver@nidcap.org https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.facebook.com/nidcap https://www.pinterest.com/nidcap/ https://www.youtube.com/user/nidcapfi https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international http://nidcap.org/blog/ http://nidcap.org/blog/ https://twitter.com/nidcap https://www.facebook.com/nidcapaustralia/ https://www.facebook.com/pg/nidcap/posts/?ref=page_internal https://www.facebook.com/nidcap-france-224651964347914/ https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829/ https://www.facebook.com/nidcapporto.s.joao?fref=search&__tn__=%2cd%2cp-r&eid=ardpegeiaga1nntbxftuc5h_rxdnrt8ii-onm6hfdgbdckpi_kccboc8v2auzyph-ebcs1myy48gfw3z https://www.facebook.com/pg/nidcap-france-224651964347914/posts/?ref=page_internal www.nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center (inactive) university of oklahoma health sciences center oklahoma city, oklahoma, usa director: andrea willeitner, md west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: : deborah buehler, phd email: dmb@dmbuehler.com carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: dorothy vittner, phd, rn, chpe email: dvittner@wakemed.org karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy@uclh.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: aagaard@clin.au.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt nidcap germany, training center tübingen tübingen, tübingen, germany universitätsklinik für kinderund jugendmedizin director: christian poets, md phd contact: natalie broghammer, rn email: natalie.broghammer@med.uni-tuebingen.de french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, rn, mn contact: nadine griffiths email: schn-nidcapaustralia@health.nsw.gov.au edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: trina cruz email: nidcapedmonton@ahs.ca israel nidcap training center co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il http://nidcap.org/en/about-us/membership-overview/ 2022 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 giesen j 1, campbell c2 1 speech pathology and audiology, stollery children’s hospital, edmonton, alberta, canada 2 occupational therapy and physiotherapy, stollery children’s hospital, edmonton, alberta, canada aims the purpose of this project was to institute developmental care rounds in our nicu. the premise for the project arose when, upon completion of training to become a nidcap professional, this writer posed the question, “now that we’ve completed training, how do we reach more babies in our limited time? what does it look like in practice?” the aim was to work together with families to learn how to interpret their babies’ communication, to support their babies’ positions, touch them, talk to them, and hold them in a way that they are able to attend, respond, and interact socially. methods the entcc (edmonton nidcap training centre canada) and rehabilitation therapists at the stollery children’s hospital teamed up to develop a plan for instituting nidcap rounds. these were set to occur for two hours every two weeks from october 6, 2020 to the present, excluding holidays. nidcap certified participants would include a speech language pathologist (slp), occupational therapist (ot), and another nidcap certified member (nurse, neonatal nurse practitioner, or neonatologist) when available. eligibility for family participants included those who were: a)available for rounds b)and interested in working with the team to learn more about their babies, how to connect with them, and how to support their development and c)and expected to require a long stay in the nicu input was elicited from head nurses and other nicu team members to select families to approach for nidcap rounds. the plan was to visit with three families each round. at the start of each round, one team member would introduce nidcap and the premise of rounds, providing a handout to families for reference. families were encouraged to describe their babies, what they showed them in their behaviour, their strengths, current challenges, concerns, and where they’d like support. the team would perform a joint short, guided observation, bring parent and baby together, and coach parents in providing supports. team members would then work with families to devise specific developmental care goals for their babies. the goals were recorded in the patient’s chart and reviewed with bedside staff. results/findings nidcap rounds were conducted 15 times in nine months with 25 families participating. seven families participated in two sessions and 18 in one session. nidcap rounds were attended by slp (14 times), ot (14 times), neonatologist (4 times), and neonatal nurse practitioner (one time). developmental care goals addressed included: • hold baby skin-to-skin (4) • support baby to come to alertness by speaking/singing in parents’ first language (8) • support baby to fall asleep by hand swaddling and protect sleep by keeping noise, lights, and activity low (5) • provide positioning supports to help baby maintain a comfortable flexed position in bed (4) • nuzzle at a pumped breast whenever alert and rooting (3) • implement supportive feeding strategies (swaddle, elevated side-lying position, gentle burping, pacing, hold upright during tube feeds) in order to support positive oral experiences (8) • schedule interventions when parents available to provide support (3) • gradually reduce rolls and start day/night routine in preparation for transition home (9) relevance to nidcap this project addresses the nidcap nursery program categories of the nursery environment and care of the infant, family, and professional healthcare team. conclusion by implementing nidcap rounds, we were able to use a small time-commitment to meet with many families. nidcap observations led to parents and staff partnering to define infants individualized developmental goals. nidcap rounds: reaching more babies and families doi: 10.14434/do.v15i1.33775 “it was rewarding to see the work nidcap is achieving.” nidcap trainers meeting feedback 2 • 2023 • developmental observer the influence of nidcap is steadily increasing, as evident from the comprehensive body of work it encompasses. in this edition, jacques sizun presents compelling proof of nidcap's efficacy by examining current research and practical applications. notably, there has been a surge in publications citing nidcap's principles across multiple languages, underpinning its growing global recognition. the path of our global outreach remains unwavering. the nidcap federation international, driven by dedicated members, continues to propel the frontiers of this approach. through leadership, we are privileged to embark on journeys of discovery with our valued members. an insightful introduction to monique oude reimer-van kilsdonk hailing from the netherlands, offers a glimpse of our diverse membership. joy browne enriches our understanding of apib through a survey of our members, providing valuable insights that deepen our appreciation of its implementation. a pivotal facet of the nfi is our community of family members. nina nikolova's poignant account from bulgaria exemplifies how adversity can be the catalyst for assisting fellow families. i invite the members and readers of the developmental observer to share their journeys with developmental care. we warmly welcome your reflections on training, practice, interesting case studies, and the invaluable lessons drawn from personal experiences. your contributions stand to strengthen the developmental observer and the information to move developmental care forward. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia of some approaches aimed at preventing the negative impact of frequent stressors on brain development in the nicu. the stressors are sleep deprivation, pain, mother-child separation, and sensory dysstimulation. stressors in the nicu sleep deprivation animal studies, mostly conducted on rodents, have provided useful insights with regard to sleep deprivation.3 these studies have shown that sleep deprivation may result in: oxidative stress, neuroinflammation via chronic microglial activation, and the accumulation of the abnormal proteins p-tau and amyloid-β in the cerebral cortex. these studies have also shown a neurogenesis decline via complement activation, which alters the balance of fragile x-mental retardation protein expression.3 in addition, the impact of chronic sleep deprivation on behavioral development has been demonstrated. sare et al4 found shortand long-term changes in behaviors of sleep-deprived mice, measured by activity in an open field arena. males demonstrated decreased sociability and increased repetitive behaviors. this data from preclinical studies show that sleep deprivation in the neonatal period has long-lasting behavioral changes, possibly modulated by gender. pain a meta-analysis by steinbauer et al5 concluded that neonatal pain has a large effect on neuronal cell death in rodents. the higher number of neonatal pain events was significantly associated with increased neuronal cell death, increased anxiety, and depressant-like behavior. boggini et al6 summarized the impact of pain on preterm infants’ brain development demonstrated by mri studies. a volume reduction of white and gray matter structures at neonatal and school ages is associated with early postnatal pain exposure. however, there is a possible bias, as the most severe clinical conditions are associated with higher exposure to painful procedures. mother-child separation maternal separation, an early stressful experience, can negatively impact the newborn’s nociceptive system development and pain responses at different levels7 (table 1). epigenetic mechanisms are implicated in the long-term effects of this early life stress that could also impact the next generation. sensory stimuli during prenatal development in mammals, the sensory systems do not become functional at the same time, but rather in a specific and invariant sequence: first tactile, then vestibular > chemical > auditory > visual.8 this differential timing of sensory system onset could benefit the earlier developing sensory systems as it allows them to develop without competition or interference from later developing sensory systems. in the case of preterm birth, the sensory stimuli are numerous, intense, simultaneous, chaotic, and physically different from those observed in utero.9 this could negatively impact synaptogeneditorial cover image by emmanuel angelicas doi: 10.14434/dov16i3.36574 (continued on p. 3) 8 • 2020 • developmental observer reflections on infant feeding bronagh mcalinden (mphil, bpthy (hons)) physiotherapy department, mater mother’s hospital, south brisbane, queensland, australia in may 2020, i graduated from the family and infant neurodevelopmental education – level 2 (fine 2) course. in australia, the fine program is a precursor to nidcap training. this course enabled me to improve my knowledge and practical experience when working with preterm and critically ill newborns. i found fine 2 challenged me, both as an observer and in a hands-on role, to look for and respond to the cues expressed by preterm babies. i learned to provide more individualized care to babies based on my observations of their cues and improved my ability to educate my colleagues and the families. as a physiotherapist my experience undertaking the infant feeding module was particularly valuable. feeding is not typically part of my role, so through fine 2 i was able to observe babies feeding. i learned a lot about how challenging feeding can be for preterm infants. i would like to share my experience with infant feeding in the following observation and reflections. reflections of a tube feeding i observed mia for a tube feeding as part of my fine 2 program. mia, daughter of katherine, was born at 25+4 weeks gestation and was 36+4 weeks corrected age when i observed her. mia weighed 480 grams at birth and weighed 1758 grams at 36 weeks corrected age. i observed mia in the afternoon. at the time of her feeding mia was not rousing enough to try an oral feeding. as a result, mia had a gravity tube feeding. reflecting on mia’s feeding, i felt quite comfortable watching her and this was no doubt reflected by her stable state and minimal signs of distress. in thinking about how this feeding could have been improved, prone positioning appeared as a strength for mia in helping her settle, digest and maintain a flexed position with her hand up so she could self-soothe. obviously being in this position (or full prone) on her mother, katherine’s, chest would have been preferable and i felt this was something that could be encouraged with katherine when she was present. the use of a pacifier could be something to consider, however i appreciate that mia was largely in a sleep state. however, the way her nurse prepared her position and immediate environment within her cot, really assisted mia to maintain a relaxed state and tolerate her feeding well. i also reflected on how i contributed to the noise around mia when i was conversing with her nurse. this was something i wish i hadn’t done, and highlighted to me how easy it is to become a bit complacent in these situations. i have found since beginning this course that i am much more aware of my speaking volume and those of my colleagues. i also try and move conversations away from the baby and demonstrate hushed talking. reflection of an oral feeding i observed a second baby, max, during an oral feeding to contrast difference in responses and behaviours between tube and oral feeding. max was born at 23+0 gestation and was 41+0 at the time of my observation. he was being nursed in the special care nursery in an open cot and still requiring high flow nasal pressure (hfnp) at 5l/min in 0.25 fio2 at baseline. max’s feeding regime at the time was demand feeding (roughly four hourly). i observed max for a bottle feed. reflecting on max’s feeding, i felt it could have gone smoother and reminded me how complex feeding is and how challenging it can be for a baby with existing vulnerabilities. i felt that in terms of preparation, although max was demand feeding, the timing of the feeding delivered was probably slightly overdue. max was clearly hungry and some of the energy and stress he spent prior to feeding may have been better utilized during his feeding, had it been given slightly earlier. the environment for max’s feeding, like mia’s, was busy. a quieter setting, with lightening reduced, may have also helped minimize max’s energy expenditure and stress prior to, and during his feed. i found that max tended to pace himself, something he clearly needed to do to satisfy both his feeding and breathing requirements. this was interesting to see, but also made me realise how much energy goes into feeding for a baby with chronic neonatal lung disease (cnld), such as max, and also how challenging it can be to feed to a baby like max. i did feel some concern regarding how his mother would cope with feeding, considering doi: 10.14434/do.v13i2.31059 tube feeding a newborn infant. u se d w ith p er m is si on developmental observer • 2020 • 9 how little opportunity she had had to feed max. it definitely highlighted the need to ensure that parents feel well-supported and comfortable with feeding, prior to taking babies home. i found this course module to be one of the more challenging for me. i took the opportunity to get a deeper understanding to observe how max handled his feeding. as with previous modules, a nice opportunity for contrast came out of my two observations, not only the way in which mia and max differed in their type of feeding, but also in how well each coped. mia obviously had less of a challenge (and challenging time) with her tube feeding, compared to max who had to work very hard to simply breathe and suck effectively. both max and mia had significant challenges related to their prematurity and extremely low birth weight and unfortunately both babies were in a situation where access to their mother was limited. i took from the comparison the importance of getting mia’s mother involved in her oral feeding as soon as mia was ready, to avoid the same difficulties that max’s mother was likely to have at the time of her discharge. i think from now on i will include feeding more readily into my education with parents from an early stage. by using some of the observations and reflections i have made in this module, i may be able to help parents become aware of signs of feeding readiness and intolerance. hopefully this will give my sessions a more well-rounded approach in the future. although i found it less comfortable than other modules i’m glad i had taken the opportunity to observe feeding. a feeding (tube or bottle/ breast) is usually what comes after i see the baby in my role as a physiotherapist. i am very rarely present for the duration of a feeding, having moved on to other tasks and seeing other babies. seeing how max and mia responded to feeding, a basic survival and key developmental skill, was really interesting and gave me a much better understanding of how challenging this can be for both parent and baby. this course definitely helped me gain better insight into the challenges and how a baby’s stability and robustness during feeding can indicate a lot about how mature they are, thus adding another layer to my understanding of the impact of feeding on overall development and vice versa. mother bottle feeding her newborn. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 u se d w ith p er m is si on developmental observer i t was august 15th. magdalena’s water breaks and we travel at a high speed to the hospital. early in the pregnancy we had been told magdalena could not sit, only lie down. we are keeping positive thoughts. the baby is healthy and is strong. should we call before leaving for the hospital? remember the vitamin k injection. we can do this! in a chaos of thoughts, words, and exhortations between the contractions, we try to be brave and remind ourselves that “nothing has happened before it happens”. after a troublesome pregnancy, we are finally here. the day when our boy decided to see the light of day. we arrive to the hospital. like flies around a piece of sugar, the hospital staff flocks around us and do their utmost to stop the contractions and skillfully manage to give us a break of a few hours. an obstetrician rushes into the room to announce that a research study on immediate skin to skin contact directly after birth is being conducted at the hospital and that we match the study group, as we are now expecting the preterm birth of our son. she gathers herself as if she understood very well that this was not really a good time for us to receive a lot of new information. but because she says so, we are attracted to next steps. we consider the pros and cons and decide to take our chance on the practice explained to us. the doctor responsible for the study is called to the hospital and a meticulous presentation about the study and its risks versus benefits is pointed out for us. there are no risks in our heads. just a win. now the problem remaining is that the chance to hold our boy right from the start is decided in the toss of a coin. nidcap from a parent’s perspective 20 22 | v o l 1 5 | n o . 1 the official publication of the nidcap® federation international connection is essential. — jacques sizun md (continued on p. 2) f a m i l y v o i c e s “to be able to carry a child is a gift, giving birth in sweden is a privilege, to be cared for according to nidcap is beyond everything.” —magdalena persson pettersen and andré persson doi: 10.14434/do.v15i1.33785 magdalena persson pettersen, andré persson and stina klemming inside family voices ................................................ 1 editorial ............................................................ 4 member achievements .................... 5 abstracts ......................................................... 6 journal club presentations ........ 14 john eugene buehler, jr. ................ 18 trauma informed .................................. 20 developmentally supportive care science desk ............................................ 23 reflections on the .............................. 25 nidcap trainers meeting nidcap training centers .............. 28 worldwide global perspective-ireland ........ 30 nidcap on the web ............................ 32 nidcap training centers .............. 34 doi: 10.14434/do.v15i1.33773 2 • 2022 • developmental observer there is nothing natural about being separated from your child. the doctor’s obvious joy cannot be missed when she informs us about the outcome of the draw. we will get to hold our son from the very first second. we will not leave him. a large weight falls from our shoulders and from this moment on, we are convinced that everything will go well. the midwife looks in on us in the middle of the night just to see how we are. there were no contractions, and everything was calm, and we agree on a quick check just to be sure. the eyes of the midwife are wide-open as she throws herself at lamp buttons and the alarm buttons and loudly and joyfully shouts “we are giving birth here!” in an instant, the room is filled with medical staff and machines. the birth comes in what we think can be called rocket speed. benjamin arrives into the world after nine minutes and lays on his mother’s chest. he is a small wonder and is checked and connected to devices. he gets help to breathe. the focus and seriousness in the eyes of healthcare professionals is unwavering. we observe them all in detail. their facial expressions and behavior reassure us. dazed and dizzy, we rest in their safe hands. we look at our beautiful baby boy and feel proud and calm. after two hours we are transported to the neonatal ward. we are all good. our son is with us and still on his mother’s chest and is healthy and strong. he just needs a little help to get on track, grow and develop. just as the doctor informed us about many weeks earlier when we were getting ourselves ready for childbirth in week 25. anyone can have children. but it takes something special to become a parent. the ipistos (immediate parent-infant skin-to-skin) study that we were included in emphasized that skin-to-skin care should be carried out for at least six hours to provide positive effects. we were both convinced that our little boy needed us 24/7 and divided the day into eight-hour shifts to be able to give the best care for him. we took turns having our little one on our chest, skin to skin. the days went by, and seven days passed before benjamin was put in his bed. with a firm and secure hand from the healthcare team we were surrounded by, we were guided through newborn care and parenthood. we learned how important it is to speak in a lowered voice; how to provide positive touch and not to “stroke” benjamin on his skin; how to protect him against bright light; how to support him with soft hands, arms and our bodies; how to provide safety and calm; how to feed and comfort him; how to wash him, care for him, and when that time came, how to arrange his bed for best support. when placing benjamin in his own bed for the first time at seven days of age, we got to learn about the importance of providing a blanket with our scent for benjamin to feel our presence. all this was given to us allowing time for us to adjust and become comfortable caring for benjamin. we got the best for our son and with that we were shaped into secure and calm parents who could focus on providing love and care to our son. it was unclear whether benjamin could be breastfed due to a previous operation. but after a few days with benjamin on our chest, we were asked to try breastfeeding. it was a fantastic feeling when benjamin was put to magdalena’s breast and with the help of a small “taste portion” (breast milk in a syringe) and with enormous willpower, benjamin took the breast for the first time. he who was so small. how could he know? how could he cope? by alternating tube feeding and breastfeeding, he got his meals. can you stay in the hospital forever? the days and nights passed, and we were moved into a family room. the breathing alarm went awry the first night and we were scared for the first time. when we lived in the intensive care unit, the staff kept an eye on the screens, and we kept an eye on benjamin. now it was just us. were we supposed to keep an eye on him while sleeping? we do not know if it was immediate skin-to-skin with magdalena after benjamin’s birth “if there is a time in life when you have to try your luck, it must be when having a chance for “special treatment “ to get the best opportunity to protect your child.” —magdalena, benjamin’s mother family voices, continued from p. 1 2022 • developmental observer • 3 exhaustion or a feeling of safety that made it possible for us to sleep, but the night passed, and we heard neither beeping nor howling except those from our own alarm clock that rang at benjamin’s feeding time. at rounds the next day it was announced that we would have the opportunity to go home any day. benjamin was strong and healthy. but how could we leave the nicu? it was evident that the doctor was used to parents’ concerns, and she reassured us and conveyed security. she reminded us of everything we had learned and that we were well prepared for taking benjamin home. we also got relevant cpr and first aid training and before discharge and had a mandatory conversation with a counselor. on august 31, after thorough checks, benjamin was transferred to neonatal home care. we carefully positioned him in the car seat, carried him out of the nicu and lifted him into the car. the same car that almost one year earlier, we had to leave empty-handed after a previous pregnancy. memories hit us and fear was a fact. we took a few deep breaths, looked at our son and brought out all the strength we had built up over the last few weeks and off we went! the feelings we experienced at that moment cannot be described in words. we were full of fear and were crying and laughing at the same time. benjamin was here with us, and he was fine. he curled up in his car seat with his pacifier blanket next to him. he was newly fed, calm, and relaxed, was breathing well and had a nice complexion everything that is important. let’s go home! home to us – the three of us! in the home care unit, we had a primary care nurse and she visited us twice a week to check benjamin’s weight and food intake. she patiently answered millions of questions from us. benjamin grew as expected and made giant steps in his development. after only a few days in home care, benjamin chose to eat full meals with a bottle and even cuddled at the breast afterwards. on september 11, benjamin’s feeding tube came out with a sneeze. he was probably as fed up with the tube as we were. we agreed that food should be enjoyed through the mouth and the tube was history. when we were discharged from the hospital and the nicu – what an indescribable feeling! at last, we were just like an ordinary family dealing with vomit, diapers, and visits to the health center. one thing that we continued to do, however was to enjoy our little boy skin to skin as soon as opportunities arose. gratitude and sadness. we are so grateful for getting the opportunity to be with our son from the very start… to be able to be close to him all the time, never to be separated, and to hold him skin-to-skin. we also look back at all the help we got to become the best parents for our boy. only the stars know what life would be like if we did not end up right there and then in this country, at this hospital, and in the skin-to-skin study! now, two years after benjamin’s birth, we understand that we had a journey in newborn care that is not offered to everyone. this makes us so sad. never had we thought about what newborn care could look like and does looks like for many premature babies. we have been asked if we were afraid or worried about having a prematurely born child. our only fear now, when we know that other possibilities exist, is that someone, somewhere will have to be cared for according to “routine” care in an extremely old-fashioned way and will have to be separated from their little one. being able to care for your child skin to skin, when there is a medical possibility, feels like such an obvious thing. to be able to care for your child skin to skin after a turbulent time where the odds have swayed is indescribable. a small child needs his parents, a tiny child needs them even more. and if a parent’s love and closeness is not paramount in a child’s wellbeing, then what is? thank you everyone at the astrid lindgren’s children’s hospital and everyone fighting for newborn and small babies and their parents to be able to be together always! erratum: authors amended benjamin was 2 years, 2 months corrected age in december! he lives with his proud parents, magdalena and andré in stockholm, sweden “give the children love and even more love and the common sense will come by itself.” —astrid lindgren table of contents nidcap nursery certification program ...................................................... 1 family voices ............................................. 3 nidcap reflections.................................. 5 nidcap profile .......................................... 8 nidcap training centers from around the world .................................... 10 parental satisfaction: the nidcap approach to developmental care ........ 11 supporting families ................................ 13 current developmental research ........ 14 developmental resources .................... 15 letters to the editors .............................. 17 the nidcap nursery certification program (nncp), under the auspices of the nfi, seeks to recognize a hospital nursery’s commitment to, and integration of, the principles of nidcap for infants and their families. nurseries eligible for consideration must meet the following basic criteria: they must be licensed and accredited; provide care to preterm infants under 1500 grams and 30 weeks gestation, either from birth (nicu, level iii nurseries) or in a convalescent mode (level ii nurseries); and employ a full-time nfi-certified nidcap professional. the nncp’s evaluation of the quality of a nursery’s developmental orientation and care is based on a combination of written materials submitted by the applicant nursery, as well as a series of interviews and observations conducted on-site by an nfi appointed nncp review team. this review team consists of three nidcap professionals with complementary backgrounds (i.e., neonatologist, nicu nurse, and a member of one of the developmental disciplines [e.g., psychologist, occupational therapist]). nidcap nursery certification (nnc) application process the nnc application process involves the following steps: 1. nicu professionals interested in nidcap nursery certification first complete an initial screening application, which includes a site self-assessment, nicu demographic materials, and the identification of a contact professional at the site. should a nursery fail to meet the basic eligibility criteria, the nncp review team will provide recommendations and suggestions for the nursery’s next steps towards a successful application. 2. once the screening application is deemed appropriate, nicu professionals prepare and submit the nursery self-assessment questionnaire with additional supporting documents (e.g., nursery policies, procedures, guidelines; the nursery floor plan; photographs; and parent and staff testimonials). the applicants furthermore rate their nursery on the nidcap nursery certification criterion scales (nnccs) 2009 vol. 3 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international nidcap nursery certification program deborah buehler, phd, karen smith, rnc, bsn, med and heidelise als, phd “relationships change us, reveal us, evoke more from us. only when we join with others do our gifts become visible, even to ourselves.” margaret wheatly, 1998 continued on page 2 the newborn intensive care nursery at st. luke’s children’s hospital, boise, idaho is the first to have earned the nfi certification as a nidcap nursery. the certification ceremony took place on december 9, 2008. � • �009 • developmental observer further described below. this process of self-evaluation serves to identify the nursery’s readiness for nidcap nursery certification. the nncp review team will review the documentation submitted and may request further documentation and/or clarification of the materials that were submitted. 3. should the review of the materials indicate that further development is required before nnc is likely, the nncp review team’s recommendations may include: further education and preparation of the site by attending one of the nncp workshop; obtaining further mentoring from a nidcap trainer; and/or by obtaining further nidcap training. specific guidance will be offered to the site for the next steps of growth of their developmental program. the hospital’s nicu developmental leadership team will be supported in solidifying their developmental program towards successful nidcap nursery certification. 4. when the materials submitted are deemed to reflect high likelihood of success of certification, the nncp review team, in interaction with the applicants, will develop a site visit schedule for the review of various aspects described in the self assessment documents, and for face to face interaction with the nursery’s leadership and staff. in addition, the nncp review team will also meet with parents and others in the nursery in order to obtain a full picture of the nursery’s functioning. 5. the nnc site visit consists of a three-day, on-site visit by the nncp review team. this team will seek to identify and confirm the applicant nursery’s strengths and, as indicated, provide additional guidance towards growth and successful certification. during the site visit, the nncp review team will most likely wish to walk the path that families take through the hospital to their infants’ bedsides, and will wish to observe the nursery environment and various care opportunities in action. the team will also schedule opportunities to meet with: the hospital and nursery administrative leadership; representatives from across and within the various disciplines active in the nursery; parents who may have in the recent past had a child in the nursery; and parents, who together with their infant, currently experience the nursery. 6. upon completion of the site visit, the following day the nncp review team summarizes the information and impressions gleaned from the site visit, decides upon the success of the nursery’s application for nnc, and prepares their summary report. this report will be shared with the nfi nncp steering committee, and upon the committee’s review and approval, the nfi board will be informed. once the board concurs with the nncp steering committee’s recommendation, the applicant nursery will be informed of the outcome by the chair of the nncp. 7. should the review process yield a successful nidcap nursery certification, the nncp chair in collaboration with the nfi board and the applicant nursery will determine the nature and timing of the nnc award ceremony. nidcap nursery certification criterion scales (nnccs) the nncp steering committee has developed the nidcap nursery certification criterion scales (nnccs). this tool assists an applicant nursery to assess itself on the level of quality and the degree of adherence to the key nidcap concepts of: individualization of all care and environmental aspects; familycenteredness; developmental support for all infants and families cared for in the nursery; and developmental support for the staff involved in delivering such care. the nnccs are also utilized by the nncp review team in the assessment of the applicant nursery’s standing on the key nidcap concepts outlined above. the nnccs describes five levels, which are operationalized by 5-point, descriptively defined rating scales. these are grouped under four main categories of a nursery’s characteristics: 1. the physical environment of the hospital and the nursery; 2. the philosophy and implementation of care of the infant; 3. the philosophy and implementation of care of the family; and 4. the philosophy and implementation of care of professionals and staff members. additionally a 5-point nursery summary score is defined. the five points of each of the rating scales refer to the following five levels of care: (1) traditional, conventional care; (2) beginnings of nidcap adherence; a semi-annual publication of the nidcap federation international © 2009. articles from developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd gretchen lawhon, rn, phd text editor sandra kosta, ba printed on recycled paper nidcap federation international (nfi) contributions we would like to thank all of our individual donors and the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation developmental observer nidcap nursery certification program continued from page 1 continued on page 4 developmental observer • �009 • � fa m i ly v o i c e s laura r. johnson, md/mph candidate every year around my birthday, my mom likes to re-tell the story of my somewhat eventful but ultimately happy birth. she went into early labor when we were only 31 weeks along. she spent the next two weeks in the hospital, flat on her back, and i was born at 33 weeks, which, back in 1981, was nothing to sneeze at. after three weeks in the duke university newborn intensive care unit (nicu), she and my dad were able to take me home, just in time for christmas. as i learned more about the fascinating process of childbirth, i had more and more questions for my parents. how many people were in the room when i was born? what was it like to have to go home from the hospital and leave me in the unit? were you scared when you knew i was coming early? after i started medical school, my questions became more scientific: did i need supplemental oxygen? did my mother receive antenatal steroids? how did the team treat my pda? did i breastfeed right away? i suppose these are not the normal questions one asks about one’s early weeks of life, but i had a willing source of answers and never got tired of hearing the story one more time. i learned that my mom panicked when she got a casual phone call from the nursery saying i was in a “little bit of heart failure but should just pee it out.” not the best way to update a mother on her baby’s condition! i paged through my baby album while my mom pointed out how much we’ve learned about developmentally appropriate positioning, and we both cringed at the sight of my four-pound body strapped down to a brumley board (a flat mattress that allows an infant to be supine in four-point restraints), squinting in the harsh glare of the nursery lights. i realize now that by growing up hearing about developmental care and a family-centered approach, i had always thought of nidcap and neonatology as almost one and the same. of course the early environment has a profound effect on the developing brain. of course the family should be involved in the decision-making and care of the newborn. of course each individual baby is a person with unique strengths, challenges, and needs. during my third year of medical school, while doing a two-week rotation in the special care nursery, i came to learn that not everyone views newborns, especially preterm infants, in the same light. when my classmates or mentors find out that i want to specialize in neonatology, they sometimes ask, “why? you never get to talk to your patients and find out what’s wrong.” or, “it’s like veterinary medicine.” i know neonatology is not for everybody, but i find these comments frustrating. by implying that the only way to communicate is with words, they are ignoring the many non-verbal cues that we all use to convey what we’re feeling and thinking: body language, facial expressions, and vocalizations. in neonatology, the goal is to integrate these individual attempts at communication with the critical information provided by the physical exam, vital signs, laboratory tests, and imaging. it’s the challenge of piecing together a puzzle that is unique and special to every baby that i think i will find so rewarding about this field. until this october, the annual “nidcap trainers meeting” was an abstract concept—a meeting that my mom looked forward to every year and from which she returned inspired. this year, i went with her to winston-salem, north carolina, a town about an hour from where i was born. the conference had special meaning for her, i think. i was thrilled to be able to put faces to names and to be surrounded by a group so dedicated to the nidcap model and to improving the care of preterm infants. one of the recurring themes of the conference was the importance of passing down the nidcap philosophy to the upcoming generation of providers. who will carry the torch of individualized developmental care, and who will spearhead the worldwide research that is needed to support and expand the model? for myself and many of the other first-timers at this meeting, we could not have felt more welcomed and encouraged to be there, learning more about nidcap, networking with committed providers from all over the world, and reflecting on why we had chosen this path. my experience at the nidcap conference brought to mind another time when i had been taken under the wing of a more experienced mentor, a neonatologist at one of the hospitals where i am training. we had a fullterm baby in our nicu developmental observer • �009 • � laura and her mother, melissa johnson, at the nidcap trainers meeting in winston-salem, north carolina, october, 2008. laura johnson is a md/mph candidate at emory university school of medicine and rollins school of public health, atlanta, georgia. she is the daughter of melissa johnson, phd, nidcap trainer and co-director of the carolina nidcap training center, and robert b. johnson, md. � • �009 • developmental observer nidcap nursery certification program continued from page 2 with essentially no brain function due to an almost-complete placental abruption. the family and care team had decided on a time to remove the baby from a ventilator, support his father in holding him, and let him go in peace. i didn’t know what to expect and was incredibly moved by the family’s history—they had lost an older child less than a year ago. my attending saw the look in my eyes as 2 pm, the designated hour, approached and pulled me aside into the resident call room. we sat on the twin beds and she asked me if i had any questions about what was going to happen. “have you ever seen anyone die before?” i hadn’t. “do you have any ethical concerns about why we’re removing him from the ventilator?” i didn’t. “are you worried that you’re not going to be able to do this and be there for the father?” i definitely was. the neonatologist then told me about the first time she was in a similar situation, as a new intern, and about all of the emotions she felt then and still feels every time she reaches this junction with a family. in fact, her mentor had pulled her aside and asked her the exact same questions she was asking me now. it was valuable to hear how she processed that experience and how she has struggled since then to find the right balance in her involvement with the baby and the family. she explained in detail the dying process, how we could make it more comfortable for the father and the baby, and gave me concrete tasks to do once 2 pm arrived. all of this i found extremely helpful as a learning opportunity, but what i appreciated the most was that she: a) read my non-verbal cues and recognized that i was overwhelmed with this situation, and b) passed on what she had learned from an older and wiser doctor that she trusted. she understood that not everyone responds identically to difficult situations, and she was willing to take the time to make sure that i was prepared both clinically and emotionally to support the family. i am certain that i will do the same for another scared young medical student someday. as the daughter of a child psychologist and nidcap trainer, a former 33-week preterm, and now a medical student interested in neonatology, i believe that nidcap is a thread that ties it all together. it is a philosophy that was under development when i was born in 1981, it has been important to my mom’s work for many years, and it is an approach that i am now committed to integrating into my practice as a future physician. see you at the next nidcap trainers meeting, in chicago, in 2009! (3) inconsistent nidcap adherence; (4) consistent nidcap adherence; and (5) distinguished level of nidcap adherence. nurseries that consistently score ratings of (4) on the key areas of functioning (i.e., infant, family, professional and nursery staff care and support) are considered appropriate for nncp certification designation. aspects of the physical environment that are beyond the control of the nursery leadership and staff, are weighted less in the final determination. next steps at this time, the nncp has certified one nursery, the nicu at st. luke’s children’s hospital in boise, idaho. by the end of 2009 the nncp expects to have completed two additional successful nidcap nursery certifications. the nncp expects to accept new applications at the beginning of 2010. at this point three nurseries have indicated that they wish to be placed on the waiting list for 2010. the nncp steering committee will accept statements of intent of application and will continue to place such nurseries on the nncp waiting list. the nncp steering committee has adopted a “first come, first serve” policy in establishing the order of consideration for application review. the nncp steering committee furthermore is very aware of the ultimate necessity to develop special financial supports in the form of grants for the certification of nurseries in third world countries and those that serve indigent populations. interested nurseries should contact the nncp chair person,* or the nidcap trainer with whom they currently work, in order to obtain assistance in planning their application. assistance to a nursery with the process of self-evaluation is typically helpful in guiding an interested nursery towards producing a successful application. the nncp additionally plans to develop workshops and educational conferences, which will assist nursery representatives in their nncp application and nursery development. the nidcap nursery certification program is both a goal and a process. nurseries, which apply for nidcap nursery certification, define the areas of their current strengths and those for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. *contact: nncp chair, karen smith, rnc, bsn, med, st. luke’s nidcap training center, st. luke’s regional medical center, 190 east bannock street, boise, id 83712, usa voice: 208-381-4374; fax: 208-381-7668; e-mail: smithka@slrmc.org developmental observer • �009 • � n i d c a p r e f l e c t i o n s deborah buehler, phd the disciplines of neonatology, nursing, physical therapy, occupational therapy, speech and language therapy, early childhood education, early childhood special education, and psychology were represented at the 19th annual nidcap trainers meeting in winston-salem, north carolina, october 2008. the “voices” of each individual infant and family in newborn intensive care nurseries hold the key to understanding, and therefore re-designing, our approach to best promote health and well-being. this is the basic premise of the newborn individualized developmental care and assessment program (nidcap). each infant and family member informs and shapes our collective care to promote optimal outcome. nidcap has become integral to the newborn intensive and special care nursery experience all around the world. nidcap professionals are represented within all disciplines working in these nursery settings and each professional discipline brings a unique perspective to their work. these caregivers work as cohesive team members to achieve their overall goal, that of supporting infants and families. at the 19th annual nidcap trainers meeting, nidcap professionals discussed the implementation of nidcap within and across their profession, the challenges in understanding and integrating the nidcap approach, the opportunities inherent in nidcap, and next steps of development of the nidcap model. presented below are the themes that emerged from each of the discipline-based groups’ observations and discussions. applications of nidcap each professional group described nidcap as the theoretical framework and systematic approach to care that provides support, and expands and deepens their understanding of infants and their families. each of the professions working in newborn intensive care settings draws inspiration from the basic principles of nidcap. these principles state among others, that infants are active participants in their own care; that change is a continuing process; that focus on strengths enables vulnerabilities and problems to be overcome; that infants and families must be understood in a holistic ecological framework; that support for infants and families must be meaningful and effective in the context of their social and physical environments; that the family system is the functional framework for and relevant context of an infant’s development; that infant’s mental health is as important as their physical health; and that the relationship between brain and behavior is inseparably intertwined and must be respected and regarded at all times. all of the professional groups viewed nidcap as a framework and an instrument used to hone and refine their observational and direct care skills, thus effecting positive change not only in the everyday experiences of the infants and families, but ultimately in the very culture of the newborn intensive care nursery. the professionals from all disciplines described how the nidcap perspective informs and guides them in how they view each infant and family. they articulated that nidcap supports and enhances their understanding of the infants’ language and the methods by which they communicate comfort, discomfort and pain. nurses described nidcap professionals: collaboration and nurturance � • �009 • developmental observer nidcap’s influence on their care as offering them a way to use “their hands and their hearts” differently, for when they understand infants better, they are better equipped to care for them. for these nurses, nidcap captures “the art of nursing”; rather than performing care “on the infant”, and “doing to the infant,” nidcap care assures that the nurse provides care in a nurturing and sensitive manner. this framework of collaboration and nurturance supports all nursery caregivers to feel and be more effective in their care, as they strive to support the infant’s comfort, medical stability and development during their intensive or special care nursery stay. there was great consensus among all professional groups at the meeting that nidcap contributes the unique and valuable perspective of relationship-based and individualized care to the newborn intensive care nursery experience. the nurses reported feeling supported in their highly specialized nurturing and nursing skills, while they fulfill the many technological and medical care aspects of care, which sometimes require the infliction of clinical pain. the neonatologists reported feeling validated by nidcap in their highly specialized yet always relationshipbased implementation of intensive medical care procedures and decision making for high risk newborn infants. they commented that nidcap enhanced their feeling of competence in the interaction with infants and families, enhanced their sense of effectiveness, and also increased their work satisfaction. nidcap support professionals and consultants (e.g., respiratory therapists, physical and occupational therapists, special educators, psychologists) gain self esteem and confidence through nidcap in realizing the importance of sharing and transferring their expertise with the infants’ 24-hour front-line caregivers, namely parents, and primary nursing and neonatologist teams. for them nidcap provides greater insight for guidance and education of families and staff in the following ways: providing methods to supportively hold the infant and support the infant’s own movements and postures; comforting an infant; providing appropriate sensory-motor experiences; enhancing pleasure and effectiveness of feeding and oral-motor skill; modifying the infant’s environment; supporting infants and families during transition home and intervention planning; supporting hospital and nursery systems throughout the process of change; and conducting and evaluating research that supports infant and family optimal outcome, education, and development. the nidcap model supports nursery staff collaboration within and across professions, thus enabling family/infant relationships to flourish. it is evident that all these disciplines acknowledge the nidcap model as supportive of infant development, parent well-being and competence, and enhancement of nursery staff relationships within and across disciplines. all professions acknowledged nidcap as providing greater understanding and impetus for the use of anticipatory guidance, support and education for families and staff; for regularly performed serial observations, evaluations, adjustments and revisions of the infant’s experiences; for support and achievement of neurodevelopmental milestones; and for the appreciation of risks, facilitation of short and longer term outcomes, and preparation and assurance of success regarding transitions to home and community. professional support for caregivers plays a key role in self-awareness and growth, and therewith the enhancement of care for infants and families. such growth also aids mutual support of the staff in the nursery, in the hospital, and in the community. nidcap professionals consider it their responsibility to be informed about state early intervention requirements and regulations and to advocate for infants and their families to qualify for and receive appropriate services. nidcap professionals furthermore consider it their responsibility to provide consultation and training to early intervention providers. nidcap challenges & opportunities across disciplines, nidcap professionals make every effort to facilitate a shift from the traditional task-oriented, “fixing what is wrong” pathology-based approach to an individualized, process-orientated, strengths-based approach to care that supports development and well-being. when the nursing group described the implementation of nidcap as “an art” they were speaking to the level of astute skill involved in providing care by “participating with” rather than “doing to” infants and families. some misperceptions exist about nidcap; they range from nidcap as a minimal stimulation approach, to an environment modification approach that may include nests, incubator covers, and quiet-times among others. caregivers, using conventional practices, may believe that they are providing developmental care yet may have limited understanding about the effectiveness of their implementation. for instance, “turning off the nursery’s overhead lights” may be one ingredient of developmental care, yet it is embedded in a much deeper appreciation of infants, families and staff dynamics. nidcap care requires a deeper understanding of the critical aspect of relationships for the well-being of infants and their families. greater confidence in competencies must be fostered for individualizing care to avoid relying on prescriptive caregiving procedures. assimilation of nidcap into practice and policy guidelines and performance evaluations is required. changes within the whole nursery care experience from direct care to policy development may occur slowly and require patience. nidcap professionals describe that it takes continuous mindful renewal and team support to maintain the momentum for ongoing change and improvement. nidcap professionals described that integrating the nidcap approach into nursery practice with consistency is challenging. the timing and methods of teaching and mentoring nidcap may hold important keys to strengthening integration of nidcap within nurseries. the current model of nidcap developmental observer • �009 • � training is a level of advanced education for in-nursery professionals. yet for nidcap implementation to be smoothly and effectively incorporated, nidcap professionals call for nidcap to be thoroughly integrated into all professional training programs, in-nursery education and ongoing mentorship support. increased education is needed for nursery support specialists working in newborn intensive care nurseries for learning the medical model (including terminology), medical conditions, and the culture of the newborn intensive care nursery. newborn intensive care specialists must have advanced training and supervision in infancy and pediatrics and nidcap certification to be more effective. further, nursery professionals may require support around adopting the roles of supporters and mentors of their nursery colleagues who may be more familiar and comfortable with a “hands on” approach to care. in addition, there was a consistent call for the development of training programs within college and university settings. institutions of higher learning that offer professional entry-level through specialized graduate study and fellowship programs with nidcap as a foundation for each of the discipline training programs would be invaluable. an in-depth study of the nidcap model (regarding topics such as health, medical principles, human development, psychology, family systems, organizational systems, infant mental health, and systems learning, education and cognition) and implementation should be woven into professional curriculums. this would serve to most cohesively allow newborn intensive care to flow “from” the developmental model. further, education for hospital administrators, particularly those overseeing rehabilitation departments, is needed for the recognition, assignment and integration of only those qualified as infant development specialists to work in the newborn intensive care unit as a constant presence and resource. other challenges described include: (1) continuing to feel a responsibility to demonstrate to some of their “academicallydriven” peers that nidcap is an integral approach used to enhance the infant’s medical and developmental well-being; (2) the field of medicine’s greater valuation of traditional medical outcome research rather than the “whole organism” research that nidcap is studied with; and (3) need for creative approaches to address reimbursement for nursery services since much of the specialists’ practice is difficult to document and measure and does not lend itself to 15 minute billing installments. next steps for nidcap in discussing the next steps for nidcap, the professionals at the meeting suggested that since learning methods vary among people and professions, other mediums for teaching should be explored, such as audiovisual materials and guided demonstrations. continued development and refinement of nidcap training materials into easily understandable formats and training experiences need to be further developed. professionals across disciplines described the desire to be consistently guided and mentored to observe and to provide developmentally supportive care as they strive to integrate their understanding and translate these experiences into practice and mentoring of others. exploring ways in which nidcap education can offer continuing education credits will support caregivers in their integration of nidcap. endorsement and promotion of nidcap principles as standards of practice, regulation and policy by professional organizations (e.g., national association of neonatal nursing, american physical therapy association, american speech-language-hearing association) were described as critical next steps for integration of nidcap within the respective groups. for appreciation of nidcap as the best practice in the newborn intensive care nursery, neonatologists recommend that nidcap be integrated in all main neonatology topics. opportunities for change exist for nidcap professionals who are new to working in the nursery setting. these individuals are in a position to to establish nidcap as the developmentally appropriate foundation for practice. special educators, and specifically early interventionists, have opportunities within the nidcap model to support families after nursery discharge in their communities, by fostering understanding of infants’ self-regulation and mental health. through research and clinical experience validation, nidcap has increasingly become woven into the fabric of nurseries around the world. although many of the professional groups using nidcap were represented in the observations above, other professionals whose perspectives and insights add to the nidcap experience include: parent liaisons, social workers, respiratory therapists, child life therapists, reflective process consultants, hospital administrators and nursery support staff. the myriad humanistic perspectives brought to the nurturing of health and well being of individuals and their relationships are integral to nidcap professionals’ effectiveness. training with and using the nidcap approach forever changes professionals in how they view the experience of the nursery for the infant, the family and one another. professionals describe being sensitized to appreciating the environment and its impact on medical stability, development and social interactions. because each discipline and each individual brings their own philosophical framework, training and experiences, the nidcap perspective and its implementation become integrated in unique and important ways. valuing and drawing from these different perspectives and contributions will lead to true collaboration. this collaboration supports each individual’s professional contribution to care as well as the nursery’s overall goals in striving to best serve and meet the needs of infants and their families. � • �009 • developmental observer n i d c a p p r o f i l e kaye spence am, rn, rm, mn, fcn joy v. browne, phd, rn i first met joy in 2000 when she came to sydney, australia during the olympic games. as a nidcap trainer, joy took on the task of training some of our staff at the children’s hospital at west mead, in nidcap here in sydney. somehow she managed to combine nidcap training, inspiration, gentleness and insight into the different cultural environment she was entering. she even managed to attend the olympic beach volleyball events, sample the great reds, and sightsee with her daughter, jamie. she was given the title of “honorary aussie.” i asked joy some questions to gain an insight into her life, and i have decided to use her own words to reflect joy’s special spirit and contributions. kaye spence (ks): how and when did you start your professional career? joy browne (jb): i can remember wanting to be a cowgirl when i was little. that didn’t happen. when i was growing up the options available to girls were fairly limited. nursing seemed to be a good one for me. i started in a diploma school (there aren’t many of those any more) and worked on my bachelors as i was completing my diploma. an over-achiever from the beginning! after graduation, i worked in an operating room to get through school. then, i got a bsn and a masters in maternal child nursing. after that, i worked briefly in a nicu. i went to a meeting in colorado in 1976, and attended a workshop given by a developmental psychologist (also a nurse originally). she was talking about some of the recent studies on attachment and it came to me, like a bolt of lightening, that i had to become a developmental psychologist! ks: when were you first introduced to nidcap? jb: in 1981 i was seven months pregnant with my second baby, traci brynne. i had just been accepted to my phd program in new mexico and decided to attend an interesting meeting in boston---something about infant mental health, as i recall. dr. berry brazelton was involved in putting it on. at the time i was directing a pediatric pulmonary center and was caring for a lot of babies who had developed bronchopulmonary dysplasia. i can remember being in a large conference room and listening to this slight woman with long dark hair who had a thick german accent (heidelise als, phd). dr. als and her colleague, frank duffy, md were talking about the assessment of preterm infant behavior (apib) and about the promise of intervening with those fragile infants that i worked with back in new mexico. i immediately had to find out how to do the apib and learn more. at the time, elsa sell, md was being trained by dr. als in the apib. in 1983, i and a couple of other brave professionals began our training with dr. sell in albuquerque, and then we were checked off on reliability with dr. als and dr. sell. later on, when i moved to oklahoma city, i was recruited by martha holmes, msw to work at the oklahoma infant transition program. she was determined to have nidcap in the sooner state. so, i was trained in nidcap and became a trainer and the sooner nidcap training center was established in 1986. i think it was the first training center to be established outside of the boston group. ks: what are your goals for nidcap? jb: i’m so invested in the vision of what nidcap provides. that is, better outcomes for babies and families, and a different view of how to treat them while hospitalized. i think that if we can clearly articulate what the babies and families are going through, and what a change we can make in their lifelong journey, that it will completely change the way we do things. ks: who do you admire most? jb: jacques sizun, md for his adeptness in the politics of getting things done and getting nidcap accepted in europe. dominique haumont, md for her leadership and unquestioned support and dedication to the developmental work, this was in spite we welcome kaye spence as the new contributing author of this column. she is a clinical nurse consultant in neonatology at the children’s hospital at westmead, sydney, australia. kaye has been a supporter of nidcap since clinicians from her unit started their training in 1999. she is an active clinical researcher with an interest in neonatal surgery, pain and feeding. kaye holds the honorary position of secretary of the council of international neonatal nurses and was awarded member of the order of australia (am) for her services to neonatal nursing. joy was the keynote speaker for the sixth international neonatal nursing conference in delhi, india 2007. there were 1000 delegates from all over the sub-continent and joy presented on humane neonatal care. developmental observer • �009 • 9 of so many setbacks. and you, kaye, who exemplifies the richness of neonatal nursing and what nurses bring to the research and clinical care agenda. i’m not sure if people realize the impact you have had on neonatal nursing in australia! ks: thank you. who is your mentor in relation to nidcap? jb: from the start, i have seen dr. als as the “go to” person. i think that she has more of the grander picture than anyone else on the planet. in other respects, the trainees that i have worked with have mentored me, teaching me so much about how they learn, what obstacles they face, and how to solve problems. ks: what do you see as the most exciting thing about nidcap? jb: what i have learned from the apib. it has been an enormous help and support in terms of my understanding and communicating with babies. when i have my hands and mind on a baby, and can see him or her begin to relax, trust my intentions, and begin to ask what i’m about-----it is an awe inspiring experience. ks: what do you see as the future for nidcap? jb: hopefully there will be more research that will make the work unquestioned and put into practice in every nicu as not only appropriate, but also a top priority. right now, i am dealing with several instances where the administration is facing so many financial problems and the first program to go is the developmental one. once people realize that the brain work cannot be omitted for any reason, perhaps there will be the kind of support that is needed and it will become a mandate. ks: what is your most memorable experience in the last 12 months? jb: seeing dr. als receive a well earned award at the graven’s high risk developmental care meeting in florida this year, and hearing her autobiographical presentation when she accepted the award. ks: if you could change something, anything, what would it be? jb: peace…..i’m so glad that we have accomplished some change in the us, which will impact the world.....that of getting a new, intelligent and reasonable person in charge! ks: now i want to find out what it is that makes joy browne the person she is. tell me about your family jb: jamie, is my first child, and she is finishing her phd in townsville, australia in tropical biology. traci brynne, my second child, is finishing her phd in ethnic studies at the university of california san diego. my husband, wyatt , is finally winding down. he had his last weekend of being “on call” forever! he directs the research department at the medical center of the rockies. and finally, mosa darling, our patient, protective great pyrenees who does an excellent job of holding the carpet down at our home in loveland. ks: when you have time, what do you like doing most? jb: traveling! i would love to hit every country on the planet. so far, i think i have “bagged” about 30. ks: that’s quite a record --what do you least like doing? jb: cleaning the house. what a waste of time. ks: of your favorite books, which book has made the greatest impression on you? jb: the first idea* by greenspan and shanker, brought together so many of the ideas and information that i had been exposed to. a very interesting integration. ks: what are your favorite places and why? jb: if i could live among the following three places i would die happy: paris, which is such a sensuous place. i love melting into the scenery, trying to not be recognized as an american. sydney, one has only to breathe in the smells of the water at the opera house to understand this. i spent the 2000 olympics there and would move there in a heartbeat. and finally, taos---my soul gets rested here. there is a sense of ethereal beauty and being held in the arms of mother earth. ks: how would you like people to remember you? jb: as the best mother my daughters could have, my husband’s partner, and as a trusted friend to so many people around the world. ks: thank you joy for sharing so much of yourself. i hope the readers of this column have discovered something about you and i am sure they will gain some inspiration from your journey. reference: *greenspan si & shanker sg. the first idea: how symbols, language and intelligence evolved from our primate ancestors to modern humans. 2004; cambridge, mass.: da capo press. joy enjoying what she loves – walks along the beach at surfer’s paradise on the gold coast in australia. 10 • �009 • developmental observer located at the wakemed health and hospitals in raleigh, north carolina, the carolina nidcap training center has provided nidcap training to nurseries in the southeast and beyond since 1989 – it’s been 20 years! it hosted its third nidcap trainers meeting in october of 2008, offering a timely opportunity to reflect on its development over the years, its current status as one of the longest established training centers (second longest in continuous operation), and one of the few based in a community hospital. wakemed health and hospitals was founded as a county hospital but has since functioned as a private not-for-profit general hospital with a training affiliation with the school of medicine at the university of north carolina (unc) at chapel hill. in the early 1980’s, a forward-thinking neonatologist, dr. james thullen (now retired), and his colleague, dr. ross vaughan (now medical director of the center), recognized the importance of input from developmental professionals in their care of premature infants. they started one of the first hospital-based neonatal follow-up clinics in the state and hired a psychologist and physical therapist. quickly the team evolved to include early childhood educator jim helm, phd, as well as physical therapist ann marie elmore, lpt, ms, and pediatric psychologist melissa johnson, phd. in our efforts to find proven strategies to improve developmental outcomes for the infants in the rapidly expanding intensive care nursery, our team discovered the work of heidelise als, phd and her colleagues in boston, and from 1986 through 1990, we obtained training and certification as nidcap practitioners. jim helm and melissa johnson became nidcap trainers in 1989 and 1990, respectively. over the years, we have continued the work of the center as well as providing developmental services in the intensive care nursery (icn), follow-up clinic and pediatric service. jim helm, the center director, and melissa johnson, nidcap trainer have attended every nidcap trainers meeting since the first meeting was held outside of washington, dc in 1990. the carolina nidcap training center is unique in its position in a community hospital with an academic affiliation but with a strong identity and mission in patient care. the unflagging support of the medical and nursing leadership of the hospital has allowed the developmental team to maintain an integrated role in the daily life of the unit. with this support, the group of developmental specialists has expanded over the years, along with the help of innovations, grant-writing, and broad institutional support. marie reilly, pt, phd, joined the team in 1991 and divides her time between wakemed and her faculty position in the physical therapy program at unc-chapel hill. in 2002, a successful grant authored by jim helm and ann marie elmore, with support from the rest of the team, brought resources from the north carolina smartstart program to wakemed to begin a program called hospital to-home intervention program, or hhip. this innovative model drew inspiration from the nidcap program, and also from the infant behavioral assessment1 (iba©) and the family infant relationship support training2 (first©) program. hhip provides relationship-based support to families of preterm infants at the bedside during their icn stay and as they are transitioned home and connected with community service providers. currently hhip has a diverse staff of five who each bring unique professional skills including the parental perspective. another key function of the team is providing ongoing follow-up to icn graduates through age three in the special infant care clinic. this clinic has grown to three mornings a week, with three neonatologists and five developmental specialists. all nine of wakemed’s neonatologists rotate to cover the clinic, thus facilitating a degree of continuity of care and solidifying an appreciation of the importance of icn-based developmental care, not always available when non-icn physicians provide coverage to a follow-up clinic. to further improve continuity for families, the clinic staff has recently collaborated with icn management to develop a program for nurses who are given educational credit for observing visits in the follow-up clinic. it has turned out to n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d melissa johnson, phd and jim helm, phd 10 • �009 • developmental observer the carolina nidcap training center –twenty years and going strong from left to right, jim helm, phd, melissa johnson, phd, ann marie elmore, lpt, ms, beth cooper, med, marie reilly, pt, phd and cindy redd, med. missing from the photograph are: ross l. vaughan, md, clinical professor, pediatrics, university of north carolina (unc) school of medicine at unc-chapel hill, medical director of carolina nidcap training center, and medical director of neonatology, wakemed faulty physicians, wakemed, raleigh, north carolina; and lynn policastro, bs. photo by brenda nabors. continued on page 18 in child health care it is known that parental satisfaction is highly dependent on the amount and quality of communication between care providers and parents.1 parents convey a strong message to care providers about the importance of being kept informed about the care that their infant is receiving and the infant’s progress. parental satisfaction identifies the match between the unit culture and the parents’ expectations.2 previous research has indicated that parents of infants who are hospitalized in a newborn intensive care unit (nicu) are particularly stressed by the appearance and behavior of their sick infant, and by the alterations in their parental role.3-5 knowing this, we hypothesized that implementing the newborn individualized developmental care and assessment program (nidcap) would make a difference in the lives of these parents and their infants. methods a prospective, phase-lag cohort study was performed. in the first phase, a cohort of infants receiving conventional care was enrolled, and assigned as the control group (cg). subsequently followed by a nidcap introduction phase during which five nurses were nidcap trained and certified as nidcap observers.6,7 all other nicu nursing and medical staff were also introduced to the nidcap approach to care. then a second cohort of infants, the intervention group (ig), were enrolled. these infants received care guided by the nidcap approach. infants born 30 weeks of gestational age and ad mitted to the level iii nicu at the emma children’s hospital, academic medical center, amsterdam, the netherlands, were consecutively included within three days after birth. the cg was enrolled between august 2001 and january 2002 and the ig was enrolled between october 2002 and april 2003. parental consent was obtained for both groups of infants. infants with congenital abnormalities, congenital infections, and parents who were not able to communicate in dutch or english were excluded. the cg received the standard care practiced at that time. this included: primary care nursing; skin-to-skin holding; supported breastfeeding; early use of clothing; use of sheepskins and/or hammocks; and provision of pacifiers, stuffed animals, and toys. parents were supported to take part in the daily care of their infant. the ig received individualized care based upon the naturalistic observation of the infant before, during and after caregiving. a written report and recommendations were developed from the nidcap behavioral observations. parents, nurses and doctors were supported by the nidcap trained nurses to use these individualized recommendations while caring for the infant. the nidcap behavioral observations were implemented within three days after birth and were repeated every seven to ten days, or when major changes in condition and hence treatment occurred. nidcap care ended with the discharge of the infant from the nicu to home or to another hospital. assessment tools the nicu-parent satisfaction form (nicu-psf)8 is a self-reporting questionnaire developed to measure parents’ perceptions of care. it targets areas for improvement and evaluates the quality of care delivered (i.e., that meets or exceeds the needs and expectations of parents and their families). the concepts measured include: general satisfaction; continuity of care; communication and information; preparedness; involvement in care; being a parent; being near the baby; support; and follow up.8 the possible scoring range is between 50 to 243 points, higher scores reflect greater satisfaction. the nurse parent support tool (npst)9 is also a self-reporting instrument. parents rate the amount of nursing support received from the nursing staff. the scoring range is between one to five points, with higher scores reflecting greater amounts of perceived support. the scale uses four dimensions (i.e., information, appraisal, emotional support, and nursing care) to measure the amount of support.9 both of these aforementioned instruments were tested for their validity and reliability.8,9 questionnaires were given to parents on the day their infant was transferred to another hospital or was discharged home. results in the cg, two infants died and their parents were not given the questionnaires. background characteristics of the two groups of parents and infants studied were not statistically significant, except for two infant descriptors: birthweight (p = 0.03) and multiple births (p = 015). response rates for both questionnaires were high (cg: 96% and ig: 92%). the mean score for the cg on the nicu-psf was 174.04 (sd = 20.98); for the ig the mean score was 185.67 (sd = 17.74). this is a statistically significant difference (p = 0.041) indicating that ig (nidcap) resulted in a higher level of satisfaction. almost all separate concepts showed an increase in mean scores in favor of the ig. only the concept of preparedness showed statistically significantly difference, with a mean cg versus ig of 13.83 versus 16.38 (p = 0.038). the joke wielenga is presently working as a nurse researcher at the emma children’s hospital/academic medical center in amsterdam, the netherlands. joke is conducting research on developmental care including nidcap (i.e., pain, breastfeeding). in 2008 she received her phd after writing her dissertation on stress and discomfort in the care of preterm infants, a study of the comfort scale, and nidcap in a dutch level iii nicu. parental satisfaction: the nidcap approach to developmental care joke m. wielenga, rn, phd developmental observer • �009 • 11 concept of being a parent had a slightly lower mean score (9.39, sd = 1.73) in the ig compared to cg (9.78, sd = 2.09), though this was not statistically significant. on the npst, the cg had a mean total score of 4.10 (sd = 0.59); the ig had a slightly although not statistically significant higher mean value of 4.26 (sd = 0.37). the correlation between support (npst) and satisfaction (nicu-psf) scores was outstanding (r = 0.893). in addition further analysis was conducted utilizing the nicu-psf, npst, and the neonatal therapeutic intervention scoring system (ntiss)10 which measures the length of stay and socioeconomic status. significant correlations among the scores of these three instruments were not found. there was no correlation between the number of nidcap behavioral observations (median: 4; range: 2-9) conducted and the scores on the nicu-psf or npst in the intervention group. there were no differences between the scores of the fathers and mothers. the open-ended questions of the nicu-psf on positive experiences were categorized. parents of the cg most frequently mentioned: the (unexpected) progress of their infant; the gifts they received because of national holidays; the pictures made by the nurses; and the stories nurses wrote in the infants’ diaries. parents remarked on the kindness of the nurses and their way of communicating. the parents of the ig (nidcap) reported on the support, involvement, interest, and honesty of the nurses and the explanation of the behavioral observations. some of these parents also acknowledged the national holiday gifts and the progress that their infant was making. both groups of infants experienced set backs and medical complications and the parents reported these as major negative experiences. cg parents also mentioned negative experiences concerning the transfer and the communication around transferring their infant to another hospital, resulting in feelings of powerlessness. the ig parents mentioned the discrepancy between nurses in the way the recommendations from the nidcap behavioral observations were implemented. discussion with traditional care (cg) scoring as high as it did, it seemed almost impossible to expect a significant increase after implementing nidcap (ig). this is complicated by the fact that satisfaction is measured among parents of infants receiving traditional care; they did not know about other care possibilities. considering that we have only just started with nidcap, we are content with the extent of improvement thus far. evaluating the separate concepts of the nicu-psf, we expected changes in concepts like involvement in care and being a parent. these concepts can be seen as the measurement of the core concepts of nidcap. only small changes in these concepts were seen, probably because parents adapted nidcap much faster than the professional caregivers. professionals had to go through the process of changing their attitudes. nurses, in particular, needed some time to change, feel comfortable and become satisfied with the nidcap11 approach. nurses reported feelings of intimidation and loss of control as a result of perceiving parents as telling them what to do or trying to take over. this has been reported by others as well.12 the perceived support (npst scores) suggests that parents are highly satisfied about encounters with the nurses. it also indicates that the nurses are perceived as providing emotional, informational, and esteem support, as well as giving a high level of care to their sick infant. as a result of this study we became aware of nursing care improvement areas. in weekly reflection sessions, the way nurses handled and made choices in care were discussed to decrease the discrepancy between nursing care practices, as well as to support the nursing staff to see the infant as part of a family. the transition to developmental care involved: acknowledging the central role of the parent in the care of the infant; fostering the parent as a competent caregiver; and integrating the roles of coach, teacher and facilitator into the existing technically expert nurse role.13 changing the nicu culture to a more individualized family-centered approach to care is a slow process; it is more of a journey than a destination. the results of our study, shortly after the introduction of nidcap, were positive and encouraged us to continue with the implementation of nidcap in caring for infants and their families. references 1. auslander gk, netzer d & arad i. parents’ satisfaction with care in the neonatal intensive care unit: the role of sociocultural factors. child health care. 2003; 32: 17-36. 2. mitchell-dicenso a, guyatt g, paes b, blatz s, kirpalani h, fryers m, hunsberger m, pinelli j, van dover l & southwellet d. a new measure of parent satisfaction with medical care provided in the neonatal intensive care unit. journal of clinical epidemiology. 1996; 49: 313-318. 3. miles ms, burchinal p, holditch-davis d, brunssen s, & wilson sm. perceptions of stress, worry, and support in black and white mothers of hospitalized, medically fragile infants. journal of pediatric nursing. 2002; 17: 82-88. 4. miles ms, funk sg & kasper ma. the stress response of mothers and fathers of preterm infants. research in nursing and health. 1992; 15: 261-269. 5. pinelli j. effects of family coping and resources on family adjustment and parental stress in the acute phase of the nicu experience. neonatal network. 2000; 19: 27-37. 6. als h. a synactive model of neonatal behavioral organization: framework for the assessment of neurobehavioral development in preterm infant for support of infants and parents in neonatal intensive care environment. in sweeney jk, ed. the high risk neonate: developmental therapy perspectives. binghamton (ny): haworth press, 1986: 3-55. 7. als h. program guide newborn individualized developmental care and assessment program (nidcap): an education and training program for health care professionals. boston: nidcap federation international, 2008. 8. conner jm & nelson ec. neonatal intensive care: satisfaction measured from a parents perspective. pediatrics. 1999; 103: 336-349. 9. miles ms, carlson j & brunssen s. the nurse parent support tool. journal of pediatric nursing. 1999; 14: 44-50. 10. gray je, richardson dk, mccormick mc, workmandaniels k, goldmann da. neonatal therapeutic intervention scoring system: a therapy-based severity-of-illness index. pediatrics. 1992; 90: 561-567. 11. wielenga jm, smit bj & unk ka. a survey on job satisfaction among nursing staff before and after introduction of the nidcap model of care in a level iii nicu in the netherlands. advances in neonatal care 2008; 8: 237-245. 12. premji ss & chapman js. nurses’ experience with implementing developmental care in the nicus. western journal of nursing research. 1997; 19: 97-109. 13. heermann ja & wilson me. nurses’ experiences working with families in a nicu during implementation of family-focused developmental care. neonatal network. 2000; 19: 23-29. 1� • �009 • developmental observer developmental observer • �009 • 1� the special needs of adolescent parents individualizing the developmental care of each infant, is the goal for tailoring our support for families. the demographic characteristics by which we describe family members, such as gender, race, religion and country of origin, provide information that can be helpful in some cases and misleading, or even destructively stereotyping in other cases. this applies to another variable that has received surprisingly little attention given its potential importance. the age of the mother and father, especially when either is a young teen, brings up important questions about the possible needs and challenges that these young parents may face. the key for developmental caregivers is to think of the designation of “adolescent parent” as an indicator of the questions that need to be asked or issues considered in planning the support of the parent, rather than as an indicator of conclusions already drawn. the literature suggests that some characteristics found more often in young parents can be especially relevant to those parents’ capacity to cope with the challenges of preterm parenting. adolescent parents may be developmentally inclined to focus on their own needs rather than those of another. while teens can be wonderfully idealistic and giving, most of their parents report that even the most responsible teens are dealing with so many of their own growth issues, that they can appear remarkably selfcentered at times. they typically enter parenting with more limited economic and educational opportunities. the young mother is also less likely to be in a stable, long-term relationship with the father of the baby; and may have increased obstetric risks, which may or may not have contributed to the early delivery of the baby.1,2 there is evidence that many of the maternal behaviors thought to facilitate infant developmental progress, such as talking, touching and smiling at the baby, as well as realistic developmental expectations and supportive parenting practices, are less likely to be present in very young parents. however, it is also evident that social support and better psychosocial function in the parent moderate these risks.3 yet, every professional who works with preterm infants and their families can think of counter examples to each of these assertions, recalling adolescent parents who respond successfully to the challenge of meeting their infant’s needs. it may be most useful to think of the parent’s age as a marker of risk and a trigger for a thoughtful assessment of certain possible issues, which can then be addressed on an individual basis. the following issues may be useful to reflect upon: first, it is important to recognize that maturity is a moving target for teens. for adolescent mothers, this is a time of tremendous change for young women from early adolescence (ages 12-14) through late adolescence (ages 17-18). the youngest teens tend to be facing complex issues of cognitive development, adjusting to puberty, defining their self-concepts, navigating transitions in their relationships with their own parents, and figuring out how to negotiate peer relationships. for these young women, parenting any baby, especially one with health concerns, is likely to be an overwhelming task for which she will need much support from her own family and community as well as the nicu staff. mid-adolescents have typically made progress along these dimensions, though still have many uncompleted tasks. they may be more likely to make use of support programs and to set goals for themselves as parents and as individuals. later in adolescence, young women tend to have more personal and educational resources and to have more realistic appraisals of the challenges they face, though they still need a great deal of support to reach their educational potential and to negotiate the accelerated transition to adulthood, emotionally and practically. second, the adolescent’s cognitive and educational foundation is important to consider, since early pregnancy is correlated with difficulties in these areas. helping parents problem-solve the need for child care to allow the young mother to continue her education while meeting the infant’s health and development needs may be critical. continuing education is one of the most important predictors of future economic stability and delayed further pregnancies for young mothers. though many preterm infants are not good candidates for regular group day care programs, due to health issues, other arrangements might be considered to reduce health risk concerns (e.g., immediate or extended family members, and/or friends may offer to share caregiving responsibilities during the day within the parent’s home). and finally, health and mental health challenges including substance abuse and depression should be assessed and addressed through direct support and appropriate referrals, in collaboration with the mother’s health care providers, community support and child protection resources. one of the most important issues to assess is the mother’s relationship with her family, especially her own mother and mother figures, as well as her relationship with the father of the baby, and the degree to which he is accepted by the maternal family. the amount of support the mother receives from these individuals may be one of the most important factors affecting her ability to successfully parent her infant. the task facing many nicu caregivers today is in supporting these developing relationships; welcoming and supporting the involvement of the people that nurture both parents; and supporting the mother’s, and if appropriate, the father’s central roles as parents of the infant. several strategies may be useful and especially powerful in this complex task, such as: 1) supporting the mother to breastfeed; 2) supporting both parents to participate in kangaroo care as much as possible, continued on page 18 melissa johnson, phd s u p p o r t i n g fa m i l i e s 1� • �009 • developmental observer inga warren, dip cot, msc staff satisfaction with nidcap psychological theories about why people do or do not implement evidence based practice identify a range of influential domains such as: knowledge, skills, roles, self-efficacy, beliefs, motivation, cognitive processes, environmental and social influences that can be investigated.1 how do these apply to the implementation of nidcap? westrup, wallin, wikibald, stjernqvist, and lagercrantz,2 developed a questionnaire for surveying staff opinions on the benefits of nidcap compared to conventional care. the same method was used by van der pal, maguire, cessie, veen,wit, walther, and bruil3 in the netherlands, and mambrini, dobrsynski, ratynski, sizun, and de parscau4, in france. this questionnaire addresses staff beliefs about outcomes (e.g., the well-being of the infants, parental participation and attachment); their views about their own skills and effectiveness; the influences of the environment; and their motivational factors (e.g., working conditions). in these studies, staff reported a positive view on: the impact on the infants’ well-being; their own ability to assess the infant; the participation of parents; and the parent’s attachment to their infant. the impact recorded on staff well-being and job satisfaction was more variable; lighting appeared to be a particular problem. van der pal et al3 also inquired about staff attitudes to nidcap with a questionnaire based on the theory of planned behavior (topb), and found that on average, it was perceived as enjoyable and fulfilling, as well as beneficial to the baby, but was also perceived as somewhat time consuming. this study also found a high level of intention to use nidcap, although staff did not always feel that this was by choice (i.e., administrative decision). medical staff generally expressed less positive views than nurses. when asked about knowledge of this developmental approach to care, 63% of staff said they were familiar with nidcap, but 50% said they would have liked more information. both tools would appear to be useful in evaluating the impact of nidcap on staff and for pointing the way for improvement (e.g., through ongoing education, and attention to the way the environment and social influences impact job satisfaction). wielenga, smit, and unk5 compared job satisfaction among nurses before and after introduction of nidcap using the index of work satisfaction (iws).6 items on the iws include pay, autonomy, task requirements, organizational policies, social and professional interaction at work, and professional status. they found that nurses expressed the same overall level of job satisfaction before and after the introduction of nidcap with increased satisfaction in some aspects after the introduction. however, there was no way of knowing if the staff who completed the survey were comparable in characteristics, such as experience, at these two points or if there had been other changes in the service (care implementation) that could have affected the results, a common pitfall in preand post-test surveys. several qualitative studies involving small groups of nurses have used interviews to tease out views that have not been raised in questionnaire-based studies.7,8 in this way, premji and chapman8 highlighted some of the tensions that can arise between staff who are developmental care trained and those that are not. hendricks and munoz,9 by contrast, gave out a questionnaire at a regional neonatal nursing conference and received 146 responses from the 170 nurses who attended this conference. while 93% of the respondents thought that developmental care was essential, 86% did not believe their unit was doing it well. satisfaction with developmental care was greatest in those units that had multidisciplinary teams. finding ways to measure staff satisfaction with nidcap could help us to understand more about the barriers to implementation. from the data available, it appears that concerns about safety and working conditions are most likely to trouble staff while, at the same time, most of the staff see benefits for the well-being of the infant and the engagement of parents. the support of developmental care teams and leaders is perceived to be a positive way to overcome barriers to developmental care implementation. the units that have attempted to measure staff satisfaction with the nidcap approach to care have been early adopters of nidcap in europe. these units may be forward looking units where one would expect to find high levels of satisfaction. as hospitals struggle to find staff to care for a growing population of preterm infants, positive staff feedback may help to sway management to implement nidcap; not only because it is perceived as a better way to care for babies and their families, but also because it could be an attractive recruitment incentive. references: 1. michie s, johnston m, abraham c, lawton r, parker d & walker a. making psychological theory useful for implementing evidence based practice: a consensus approach, quality and safety in health care. 2005; 14: 26-33. 2. westrup b, kleberg a, wallin l, wikibald k, stjernqvist k & lagercrantz h. evaluation of nidcap in a swedish setting. prenatal and neonatal medicine. 1997; 2: 366-75. 3. van der pal sm, maguire cm, cessie sl, veen s, wit jm, walther fj & bruil j. staff opinions regarding the newborn individualized developmental care and assessment program (nidcap), early human development. 2007; 83 (7): 425-432. 4. mambrini c, dobrsynski m, ratynski n, sizun j, & de parscau l. implantation des soins de development et comportement du personnel soignant. archives of pediatric and adolescent medicine. 2002; 9 suppl 2: 104s-106se. 5. wielenga jm, smit bj & unk ka. a survey on job satisfaction among nursing staff before and after the introduction of the nidcap model of care in a level iii nicu in the netherlands. advances in neonatal care. in press. 6. stamps pl. nurses and work satisfaction: an index for measurement 2nd ed.1997; chicago: health administration press. 7. heermann ja & wilson me. nurses’ experiences working with families in an nicu during implementation of family-focused developmental care. neonatal network. 2000; 19 (4): 23-29. 8. premji ssj & chapman js. nurses’ experience with implementing developmental care in nicus. western journal of nursing research. 1997; 19 (1): 97-109. 9. hendricks-munoz kd & prendergast cc. barriers to provision of developmental care in the neonatal intensive care unit: neonatal nursing perceptions. american journal of perinatology. 2007; 24 (2): 71-77. c u r r e n t d e v e l o p m e n ta l r e s e a r c h developmental observer • �009 • 1� d e v e l o p m e n ta l r e s o u r c e s diane ballweg, msn, rnc, ccns developmental observer • �009 • 1� “ndc: neonatal developmental care” is a self-paced computer cd program designed to promote introductory understanding of developmental care and application to nicu practice. the program was developed by an interdisciplinary team led by terri daniels, m.ed. and affiliated with southern mississippi, forrest general hospital, and southern mississippi neonatology. overall program strengths and opportunities the program has numerous strengths. each volume begins with a developmental care philosophy statement promoting a holistic perspective and emphasizing the need to “modify care, interactions, and the environment based on individual needs.” a preface follows, acknowledging variation of practice across facilities and the inevitable changes in practice which will occur with evolving research. each volume is well organized. audio and text present a key concept followed by the related implications for care before moving to a new concept. many photographs and narrated video clips illustrate the concepts and implications. videos of infant handling typically show the caregiver providing smooth, gradual support for transitioning and responding to touch and movement. the parent is shown as the primary regulator for their infant in multiple videos. terri daniels shares that: “the hardest aspect to capture on video is relationshipbased care. it is hard to video emotion and thoughts that lead individuals to do one thing versus another during care,” (personal communication, august 31, 2008). addressing this challenge, video narration often follows the pattern of describing first what the caregiver is observing, secondly the caregiver’s interpretation, and lastly their subsequent action. this pattern nicely links observation with processing and response. topical references are listed on most slides and a reference list is provided at the end of each volume. some content areas provide opportunities for further discussion and critical review with a nidcap professional or trainer. the synactive theory is not addressed. subsystem information is mostly categorized by physiologic and body part response (e.g., facial, extremity) with some merging of the autonomic and motor systems. at times infants identified as being stress-free actually demonstrate disorganization such as decreasing facial tone. motor support intermittently transitions to immobilization and restraining. occasional product endorsement is present with the use of bathing and positioning items, sometimes with the manufacturer’s information visible. the content does not address consideration of timing of care within the context of the infant’s 24 hour, every day, experience. individual volumes the individual volumes also present strengths and opportunities: volume 1: observing, interpreting, and responding to preterm infant cues (30 minutes) emphasizes that infant behavior guides caregiving decisions and interactions. excellent photos and videos illustrate behaviors. some include images of corresponding cardio-respiratory monitor displays inset in the corner of the video to show heart rate, respiratory rate, and oxygen saturation information simultaneously with the behavior. some typographical errors exist in the reference list at the end of the volume. volume 2: positioning preterm infants (90 minutes) contains numerous photo and video examples of optimal handling and positioning support. occasionally turning is unsupported, especially when positioning the infant with a chest or abdominal roll. some positioning sequences are lengthy and would benefit from discussion as to why the actions presented were selected. volume 3: feeding preterm infants (45 minutes) emphasizes appropriate information including individual maturation, the need for infant stability with caregiving prior to initiating oral feeding, and the importance of the infant engagement during feeding. the content, however, contains some seemingly contradictory information. for example, one slide states the environment should not be distracting, yet conversation and a radio are audible in a video clip. other slides emphasize maturation, yet a later slide stresses the need for infants to learn to feed. the content highlights the benefits of timing feedings based on behavior rather than a schedule, then later suggests offering a pacifier every three hours to see if the infant will move to alertness for feeding. a couple of videos show an infant being well supported held in the caregiver’s arms for feeding. most, however, show infants being fed seated on the caregiver’s lap and appearing to be supported at the neck. recommendations for burping include rubbing the infant’s back or sitting the infant upright on the caregiver’s lap rather than by being placed upright on the caregiver’s shoulder or chest. there is little discussion of specific application to breastfeeding. volume 4: diapering preterm infants (30 minutes) is the strongest volume. the content thoughtfully and thoroughly emphasizes the importance of developmental support surrounding a common caregiving intervention. one of the many video clips shows handling that is less supportive, however, the rest of the content, which is well done, overshadows this. volume 5: bathing preterm infants (45 minutes) discusses and demonstrates spot and immersion bathing. the immersion bathing video of presumably introductory developmental care education program 1� • �009 • developmental observer the newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.com. the assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.com for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. a mother bathing her infant with the assistance of the infant’s older sister is instructional. the infant being bathed in the spot bathing video could have benefitted from greater motor support and rest breaks. some of the videos have lengthy segments without narration and would profit from discussion of the actions chosen by the caregivers. volume 6: using developmentally supportive practices during routine and emergency care for preterm infants (45 minutes) discusses pain assessment and non-pharmacologic support, procedure support provided by parents, and skin-to-skin holding. procedures such as heelstick, x-ray, suctioning, umbilical catheter placement, and resuscitation are shown. one of the program’s gems is a video of a neonatologist performing an exam showing a gradual approach with containment, provision of rest breaks with support, and infant repositioning following the exam. the physician explains how the infant’s behavior guides his actions. opportunities for further discussion include practices which vary from the learner’s facility such as a feeding tube taping method, specific use of oral sucrose, and use of specific equipment. loud environments are audible in some of the videos. technical information the cd series is compatible with windows 98, nt, me, 2000, or xp computer systems with powerpoint or powerpoint viewer and an audio card and mouse. the format works well for persons of all computer skill levels. sound level varies but can be easily adjusted. background sounds are seemingly unintentionally audible for a few video clips and can make the narration difficult to hear. some photos and videos are dark and more difficult to see. narration on one slide in the series reviewed stuttered and partially repeated the narration. these minor technical issues are overshadowed by the strengths of the program. anyone who has tried to create computer video education knows how challenging it is to accomplish. summary the program can serve as an introduction to developmental care for new and existing staff establishing a foundation for later nidcap training. in general, beginning application of nidcap work is evident in the content. exemplary caregiving is illustrated along with videos and information that would benefit from discussion and guided practice with a nidcap professional or trainer. variations in practice between the learner’s facility and the program, such as considering oral sucrose a pharmacologic agent rather than a nonpharmacologic pain management strategy, can be addressed at the individual facility. the lack of an evaluation component can be overcome by individual discussion and guided practice. some content, such as volume 4, may be appropriate for parent education. purchasing information the complete series costs $950 usd, is competitively priced for a computer-based education program. individual volumes can be purchased for $275 usd. lost or damaged cds are replaced at no cost. volume 2 of the set reviewed kept freezing on various slides and was quickly replaced with a functional cd. licensing allows the purchasing facility permission for unlimited use by employees of that facility. for more information, visit: www. neonataldevelopmentalcare.com. periodic updates are planned and will be sent as revised cds, free of charge. many thanks to terri daniels and the “ndc: neonatal developmental care” team for sharing their unit environment and caregiving for all to see and for allowing the developmental observer to review the education program. we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to: developmentalobserver@nidcap.org. d e v e l o p m e n ta l r e s o u r c e s developmental observer • �009 • 1� from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org. developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor gretchen lawhon, rn, phd associate editor sandra kosta, ba text editor december 10, 2008 dear nfi, camphill village copake, usa is a community of people, some with special needs, and some house parents, who care for and love one another with all their hearts and souls, and who care for the earth. this way of life is good for all people, and also for the babies and mothers that you care for. your friend, christopher duffy columbine house 23 hall pond lane camphill village copake, ny l e t t e r s t o t h e e d i t o r contented developmental care in the moment radiant 1� • �009 • developmental observer be a delight for both the nurses and the families coming to clinic with their growing children. in addition, training activities go beyond formal nidcap training. monthly talks to pediatric residents rotating through the icn deepen the appreciation of physicians-in-training for the importance of the developmental care they see being practiced by the permanent staff members and highlight their important role in supporting these efforts. frequent participation by clinical and school psychology, physical therapy, and special education graduate students expands the learning opportunities regarding icn developmental care for young professionals. most exciting is a current effort spearheaded by ann marie elmore called the “developmental caregiver” model. this model provides one-to-one video-assisted bedside training in nidcap based care for nurses who want to work on maximizing their own skills in developmental care and increase their ability to serve as a resource and support for their colleagues in their work with infants and families. community-wide training offered to early intervention professionals and early intervention care coordinators has also brought nidcap principles to those who follow our families into the early childhood years. other community activities include active participation in the local interagency coordinating council, a county-wide young child mental health collaborative, and the county-wide smart start program planning committee, which supports the team to share ideas about individualized, relationship-based infant and family care with a wider group of professionals. with such a longstanding commitment to the nidcap approach to care, the unit at times has had the opportunity to try multiple strategies to achieve ongoing important goals. for example, over the years, there have been several attempts to develop a parent support group. each time, efforts tended to be intermittently successful and then put on hold. however, with the energy and creativity provided by the hhip staff, a new model began in 2003 that has continued with success ever since. called “parents together time,” it integrates short informative talks by various staff members or media presentations such as “no matter how small” (vida health communications, inc.) with time for discussion and mutual support among families and the sharing of a meal. facilitated by hhip members, especially a graduate mother with training and experience in child development and child care, this model has proven to be sustainable and vigorous over the last five years. it further benefits the unit through easy and accessible family input and feedback and has led to increased family participation in advisory boards and committees as well. several lessons can be drawn from the work of this stable and productive center based in a community hospital in a medium-sized town. first, it is possible and extremely rewarding to undertake nidcap training and ongoing training activities in units that are not necessarily large or primarily academic centers. second, each team member brings something special and unique to the work of supporting infants and families, including (but not limited to): bedside observations; hands-on evaluation of infants; bedside parent support; bedside staff support; ongoing education for nursing, medical and community professionals; group parent support; reflective process consultation; support in the transition to home; evaluation and intervention in follow-up; community advocacy; and formal nidcap training activities. and finally, close involvement and support with medical and nursing leadership provides the bedrock of stability that allows the developmental team to both continue ongoing, valued work and to challenge itself to innovate and reflect on ways to improve the quality of their work. references: 1. hedlund r & tatarka m. infant behavioral assessment (iba©). infant behavioral assessment training manual. washington research institute, seattle, washington. 1986. please see: infant behavioral assessment and intervention program (ibaip©): www.ibaip.org or contact rodd hedlund, med at: rhedlund@ibaip.org 2. browne jv & macleod am. manual for family infant relationship support training (first©) program. center for family and infant transition, denver children’s hospital, denver, colorado. 1997. please see: center for family and infant transition: amanda.millar@uchsc.edu n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d continued from page 10 s u p p o r t i n g fa m i l i e s continued from page 13 while helping relatives understand the value of these activities; 3) sharing observations of the infant’s behavioral signals and apparent needs with the parents, and helping them share this information with their families, can keep the focus on the baby and the parent-infant relationship while helping supportive kin find a role; and 4) linking the parents with community supports, early intervention resources and with other nicu families. the good news is that many young parents are motivated to succeed with their infants, and respond warmly to adults who reach out to them persistently and respectfully. the time that preterm infants spend in the nicu can be a time to develop a relationship with the adolescent parent and extended family that may be critical in supporting successful parenting. references: 1. coley rl & chase-lansdale l. adolescent pregnancy and parenthood: recent evidence and future directions. american psychologist 1998; 53: 152-166. 2. committee on adolescence and committee on early childhood and adoption, and dependent care. care of adolescent parents and their children. pediatrics. 2001; 107: 429-434. 3. east pl & felice me. adolescent pregnancy and parenting: findings from a racially diverse sample. 1996. mahwah, nj: l developmental observer • �009 • 19 table of contentsnidcap nursery certification program...................................................... 1 family voices............................................. 3 nidcap reflections.................................. 5 nidcap profile .......................................... 8 nidcap training centers from around the world.................................... 10 parental satisfaction: the nidcap approach to developmental care........ 11 supporting families ................................ 13 current developmental research........ 14 developmental resources .................... 15 letters to the editors .............................. 17 t he nidcap nursery certification program (nncp), under the auspices of the nfi, seeks to recognize the excellence of a hospital nursery’s commitment to and integration of the principles of nidcap for infants and their families. nurseries eligible for consideration must meet the following basic criteria: they must be licensed and accredited; provide care to preterm infants under 1500 grams and 30 weeks gestation, either from birth (nicu, level iii nurseries) or in a convalescent mode (level ii nurseries); and employ a full-time nfi-certified nidcap professional. the nncp’s evaluation of the quality of a nursery’s developmental orientation and care is based on a combination of written materials submitted by the applicant nursery, as well as a series of interviews and observations conducted on-site by an nfi appointed nncp review team. this review team consists of three nidcap professionals with complementary backgrounds (i.e., neonatologist, nicu nurse, and a member of one of the developmental disciplines [e.g., psychologist, occupational therapist]). nidcap nursery certification (nnc) application process the nnc application process involves the following steps: 1. nicu professionals interested in nidcap nursery certification first complete an initial screening application, which includes a site self-assessment, nicu demographic materials, and the identification of a contact professional at the site. should a nursery fail to meet the basic eligibility criteria, the nncp review team will provide recommendations and suggestions for the nursery’s next steps towards a successful application. 2. once the screening application is deemed appropriate, nicu professionals prepare and submit the nursery self-assessment questionnaire with additional supporting documents (e.g., nursery policies, procedures, guidelines; the nursery floor plan; photographs; and parent and staff testimonials). the applicants furthermore rate their nursery on the nidcap nursery certification criterion scales (nnccs) 2009 vol. 3 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmentalobserver the official newsletter of the nidcap® federation international nidcap nursery certification program deborah buehler, phd, karen smith, rnc, bsn, med and heidelise als, phd “relationships change us, reveal us, evoke more from us. only when we join with others do our gifts become visible, even to ourselves.”margaret wheatly, 1998 continued on page 2 the newborn intensive care nursery at st. luke’s children’s hospital, boise, idaho is the first to have earned the nfi certification as a nidcap nursery. the certification ceremony took place on december 9, 2008. subscribe today! developmental observer nidcap federation international board officers, members and staff we invite you to subscribe by going to www.nidcap.org and selecting subscribe on the nfi website. subscription period: 1 year ($15) 2 years ($25) 3 years ($35) the official newsletter of the nidcap® federation international president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens. harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@ cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens. harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu tracy price-johnson, ma faculty at ucdhsc and the family centered care consultant at the children’s hospital in colorado email: price-johnson.tracy@ tchden.org roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr karen smith, rnc, med nidcap senior trainer st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu victoria youcha, edd child development specialist children’s medical associates alexandria, va email: vyoucha@gmail.com david wahl executive director email: nfidirector@nidcap.org nidcap federation international (nfi) www.nidcap.org n i d c a p t r a i n i n g c e n t e r s national nidcap training center brigham and women’s hospital and children’s hospital boston boston, massachusetts usa contact: sandra m. kosta, ba email: sandra.kosta@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center, oklahoma city, oklahoma usa co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu carolina nidcap training center wakemed raleigh, north carolina usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu or jhelm@wakemed.org colorado nidcap center university of colorado, department of pediatrics at the children’s hospital denver, colorado usa director and contact: joy v. browne, phd, cns email: browne.joy@tchden.org west coast nidcap and apib training center san francisco, california usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu st. luke’s nidcap center st. luke’s regional medical center boise, idaho usa contact: karen m. smith, rnc, bsn, med email: smithka@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu scandinavian nidcap center, lund and stockholm, sweden astrid lindgren children’s hospital, stockholm; children’s hospital, lund university hospital, lund and department of pediatrics, borås hospital contact: ann-sofie gustafsson, rn, bsn email: nidcap@karolinska.se french nidcap center, brest, france medical school, université de bretagne occidentale and university hospital brest, france co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center, rotterdam, the netherlands erasmus mc-sophia, children’s hospital rotterdam, the netherlands co-director and contact: monique oude reimer, rn email: nidcap@eramusmc.nl centro latinoamericano nidcap fundación dr. miguel margulies buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s nhs trust london, england director and contact: inga warren, dip, cot, msc email: inga.warren@imperial.nhs.uk university of illinois medical center at chicago (uimcc) nidcap training center women’s and children’s nursing services university of illinois medical center at chicago chicago, illinois usa contact: jean powlesland, rn, ms email: jpowlesl@uic.edu the nidcap training center at connecticut children’s medical center connecticut children’s medical center hartford, connecticut usa co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio usa contact: tammy casper, msn, rn email: tammy.casper@cchmc.org the brussels nidcap training center, belgium department of neonatology saint-pierre university hospital free university of brussels brussels, belgium contact: delphine druart, rn email: ddruart@hotmail.com by order of establishment become a member of the nfi the nfi has expanded opportunities for membership to certified nidcap professionals, nidcap trainees, and families of premature infants. please join us! for more information and the online application form, visit our website at: www.nidcap.org/become.html. table of contents family voices ............................................. 1 message from the nfi president ........... 3 nidcap training centers from around the world ................................................ 7 the neuroscience of skin-to-skin contact .................................................... 8 nidcap reflections................................ 10 nidcap profile ........................................ 12 supporting families ................................ 13 current developmental research ........ 14 developmental resources .................... 15 letters to the editors .............................. 17 donnisha mccadden has had three pregnancies. the first two led to the birth of three extremely early born infants, who were too young to survive. then one year after the second pregnancy, donnisha and her partner, gary boyd, were expecting another set of twins. their story was gathered from telephone interviews. the pregnancy and the birth donnisha: i found out i was pregnant very early on. i was maybe around four to six weeks pregnant. i got the cervical circlage around three months. my doctor took me out of work. as the babies started to gain weight, lying around all day became strenuous. however, i did it. gary: donnisha was pregnant with twins and we had a test in the hospital where they stuck a needle down in her belly and took some amniotic fluid. gabby was supposed to be the one that had the worst possibility of making it. they were talking about a whole host of things that could have been wrong with her. the baby that was positioned lower in the uterus, her brother gavin, was fine. no issues whatsoever. so we were most concerned about gabby. tenfold. donnisha: when the babies actually started to get heavy is when the premature labor started for me. i went into labor on december 27th, two days after christmas and the doctors and nurses did everything they could to stop it and it actually stopped. maybe a day or two later, i got transferred to cooper university hospital (in camden, new jersey) and the doctors gave me magnesium (sulfate) to stop my labor and it finally worked. so i stayed in the hospital actually for a week and that was a good thing. i think that, that week, i was happy because i was like okay “i can do this, i can do this, i can do this.” then the circlage started to 2008 vol. 2 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international family voices donnisha mccadden & gary boyd “courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.” winston churchill continued on page 2 developmental care in the moment photograph by karin schrage-hoon comforted. � • �008 • developmental observer break and open and they needed to take it out. when they did take it out my water broke, however, i still didn’t go into labor. they thought that gavin was going to come out but he didn’t, they both stayed in. and i was happy about that. very happy. then an infection set in, and that caused me to go into labor. however, it was a week later, thank god. the birth for gabby and gavin was very stressful because of how intense my labor was and how fast it progressed. i started labor in the wee hours of the morning, maybe three o’clock. however, the nurses were checking on me because they realized i had a fever that kept going up. i wasn’t telling them that i was in labor, i just kept moaning because i was trying to hold them in as long as i could. gavin was born at ten something and gabby was born an hour later. gary: when donnisha was in the hospital she caught an infection and it infected my son. he didn’t make it. donnisha: gabby was one pound six ounces and she was born at 24 weeks. she had just turned six months to the day when i had her and gavin. it was very stressful. she was actually coming out in her water sack. i remember, that her dad said when we got to the end, she tried to open her eyes but she couldn’t she was too premature but she did try… my birthing experience was not a pleasant one, not for me. the newborn intensive care unit donnisha: well… the ever-going roller coaster that they say happens, it definitely happened. first week, first three to four days, gabby seemed fine, no problems, she needed a little bit of oxygen, then we went down the roller coaster with her catching an infection. they were trying to feed her, and then she had green (stools) so they gave her antibiotics. then gabby starts to progress with her eating, then we go back down with her eating through the tube. and then we go back up another roller coaster and then we go down with an infection, her blood culture is not coming back correctly. it was a trying time. then gabby had jaundice. it was just a lot. it was just a lot to see how small she was when she was born that young. she was very, very tiny. her skin was transparent. honestly, looking at her now and then, it’s been remarkable. it’s a remarkable change. she is totally gabrielle. totally her own person now. a totally different person now. not only was her medical course a roller coaster, but it was also a very emotional roller coaster. your emotions are high and then they are low, then they are high and then they are low again. it’s a very stressful situation to be in. however, you have to do what you have to do. you can’t just look at their little bodies and say “oh well,” and then you don’t come, you don’t visit them, you don’t sit with them, you don’t talk to them, you don’t hold their little hands, you don’t participate in the day to day care. i feel that would make them decline as far as their health and their getting bigger and growing stronger. that’s my opinion. i was there as long as i could be there. in the beginning, i would go and stay there all day, until eight or nine o’clock at night. if the doctors were coming and doing rounds or a change in shift, i could basically tell them what happened. that’s how much i was there. gabby had this, this, this, that and the other; this is up, this is down. i could do that. gabby needed me. because of her prematurity, she still needed the warmth from me. and honestly, i kangarooed as much as i could. i was a nervous wreck in the beginning because she was so small. her dad kangarooed when she was almost two pounds. i was so nervous about doing that because, i just felt like she was so tiny. i couldn’t do it, but her dad did it. and afterwards, i got used to it. i felt like the doctors and nurses were my family. you cried, they cried. it was like one big family all the way down to the receptionist. it was nice. the head doctor, dr. stahl, was wonderful. in my eyes it is amazing to me, because so much individual attention normally doesn’t happen. if i was just going to the hospital on a regular visit, i’m not going to get to see the head doctor. that was very supportive in my opinion. the doctors and a semi-annual publication of the nidcap federation international © 2008. articles from developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd gretchen lawhon, rn, phd text editor sandra kosta, ba printed on recycled paper nidcap federation international (nfi) contributions we would like to thank all of our individual donors and the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation developmental observer continued on page 5 family voices continued from page 1 developmental observer • �008 • � when recently visiting a relatively wealthy north african country, i had the opportunity to visit the capital city’s university children’s hospital nicu. i stepped into a barren, grey, factory-like open hall with cold fluorescent ceiling lights over metal cots and large, bulky milky-plastic incubators lined up along a seemingly endless long wall. shrill alarm, pager and telephone sounds incessantly pierced the air. i had come with high expectations. suddenly i felt transported back to the nicu-world of the 70’s in the united states. despite the internet and on-line worldwide access to many professional publications, and numerous international medical congresses, thousands of emaciated and limp infants, clad only in huge plastic diapers, still lie on their backs, depressed and alone in many countries and cities all over the world. newly admitted infants, arching and protesting their treatments and abandonment quickly become subdued by relentless routine intensive care that emphasizes equipment and antiseptic procedures above all else. it is difficult and painful to remember that just 30 years ago most nicu care was like that. only professionals were admitted to the unit. loudspeakers overhead incessantly announced lectures and doctors’ pages from anywhere in the entire hospital. cleaning buckets and buffing machines, and those who operated them, merrily entered the nicu at any time. staff members, well intentioned, called to one another from the entrance door to the farthest incubator’s nurse and doctor. the understanding we have gained over the past three decades in reading the infant’s language has made it increasingly clear that the parents are quintessential and critically important to ease the infant’s often abrupt and unexpected transition from the womb to the nicu. we have learned that parents are the best medium for healing and development. gradually parents’ presence has become increasingly familiar to the technically trained nicu staff. early on, parents were often relegated to standing at the incubator for short periods of time, as they gradually gained the trust of the staff that indeed they know and care deeply about their infant. yet they also dutifully leave when the messages (whether spoken, in gesture, explicit in the emotional ambience, or the physical environment) tell them that they have outstayed their welcome. often the parent booklet they receive states explicitly that they are invited to come at any time, 24 hours around the clock. yet, still today in too many nicus, even in those with individual family rooms for each infant and family, it’s still a struggle for staff to live up to their own best proclamations. the mother or father who comes to be with their infant at seven o’clock in the morning and reluctantly leaves at eleven o’clock at night, may still today, in a modern nicu, be described as “controlling” and mistrustful of the staff ’s skill and caring. much staff education, emotional support and guidance is still required to effectively enhance staff confidence and trust to truly value the parents as collaborators and their infants’ foremost caregivers, nurturers, and life-long safe havens. less psychologically demanding innovations over the last 30 years have become standard care by now in many us and european nicus (e.g. all infants have nests and many incubators are covered; everyone appears to know about the importance of nonnutritive sucking, of support to midline positions, and of the values of skin-to-skin holding or kangaroo care). the bigger step is the astute appreciation of each infant’s thresholds to stress and the conclusions to draw from this recognition for the individualization of care and experience for infant and family, including: the slow pacing of care; feeding only while holding the infant; support to falling and staying asleep while held for prolonged periods; and the many subtle aspects that truly enhance an infant’s competence and reduce stress. while everyone is concerned about brain growth and nutrition, the way the nutrition is delivered and received by infants still poses a challenge. the infant’s active partnership in all care collaboration, the only way that care may become effective as intended, is a continued and active topic for staff education. the situation becomes startling when all of the considerations are still below the threshold of conscious staff awareness: a nicu where mothers come reliably every morning to bring the milk that they have pumped at home for their infants and pass it through a small window to an anonymous hand on the other side; where parents come every day at a fixed hour in the afternoon for 10 minutes to stand in a dilapidated corridor and look into the nicu through a dirty, milky, scratched glass window, to see only the incubators and perhaps catch a glimpse of their infant’s feet as they extend toward the foot end of the incubator; or hear an infant, maybe their own infant, cry with no one to attend to and comfort the upset child; where nurses with sad, yearning eyes wistfully care for their forlorn charges message from the nfi president the courage to trust � • �008 • developmental observer with little hope to find understanding from their leadership; and where money is spent on technical innovations yet is not available for pacifiers, blankets, chairs, and support and education to nurses and young doctors, who are still hopeful and seek to make a difference. every day the staff cares for the smallest and sickest infants, every day they sustain the pain of their forlorn charges, their emotions and creativity held down, restricted and bent to the rules that govern the system from the top. when death is almost hoped for and is the likely future of a preterm infant; when families are left to their own devices for rehabilitation and care should their infant survive the nicu; when even those with minor disabilities can expect a future fraught with difficulties; then nidcap and the nidcap stance and spirit are very much warranted as critical care components within the hospital system. nidcap, a systems approach, helps bring about systemic change, not only nicu and hospital system change, but also societal and political system change. each infant and each family count. each infant and each family are valuable. but where to begin? anywhere is better than not at all: one infant and one family at a time; one nurse and one doctor at a time; one nicu and one hospital at a time; one city and one country at a time. this is the only way to create the necessary change. the medical visitors to this nicu were taken “on tour by the medical director,” while the nurses stepped out of the way. as there were no explicit rules for psychologists, i took the liberty to look and smile at the nurses. they gathered quickly around me, and despite our language barrier, they clearly were eager to learn why i was there. in just a few minutes we stood together at a bedside and watched a little boy, who was severely growth restricted, lay flat on his back, flailing his arms, his shoulders retracted and pulled high up to his ears. he arched and screamed in utter despair with his mouth wide-open, ashen grey despite his arousal. i gestured that he might enjoy being tucked in and have something to suck on. the nurses shook their heads in sadness. he was not allowed to eat now. i tried to convey that sucking might help even without food. they looked at me, incredulous. they had never heard of pacifiers and the hospital had none. with gestures and mime, one nurse understood the concept and went to fetch a nursing bottle. we fashioned a pacifier out of the nipple and stuffed it with a piece of cotton cloth. “now what?” they seemed to ask. when i then supported and guided one of the nurses to open the incubator and gradually place her hands around the infant’s feet and legs and speak to him softly, then gather his hands in her hands, this helped his shoulders to relax, and he gradually looked at the nurse and calmed somewhat. when i now guided her to help him onto his side and to cradle him with her right arm, she spontaneously, with her left hand, supported his grasp, and all the while she spoke very softly to him, her eyes became shiny, her face soft and caring. the other nurses stood and watched, astounded and taken by the little boy’s visible transformation in interaction. one nurse went to get some more of the cotton cloth and we made a soft cradle roll to support the little boy along his back. the nurse engaged with him, gently took the makeshift “pacifier” we had made, and held it close to the infant’s lips. while still crying softly, he grasped the pacifier with both hands and pushed it into his mouth, sucked like fury, and looked with wide eyes directly at his nurse. she in turn was glued to him and kept her eyes on him. her hand cradled his body and she slowly covered him gently with another cloth that her colleague miraculously produced. the little boy gradually calmed and drowsed off to sleep, as the pacifier dropped out of his slightly parted, relaxed lips. very gently the caregiving nurse pulled her hands one by one out of the incubator and softly closed its doors. her face, her posture and her whole being had changed, becoming soft, fluid, and caring. the nurses crowded in on me. how can they learn more? how will they convince the doctors to help them learn more? how will they bring in the mothers and fathers? the bravest of the nurses, who had just helped the little boy, confided with tears in her eyes that she had smuggled the father of one of the infant’s into the nicu several times in the evening, when she felt it was safe. she had observed what it meant to the infant to have his father talk to him and even briefly hold him. no wonder she was so open to try the next step under the guise of my visit. this is but a tiny yet important seed in the beginning of a garden. i am convinced that with the courage to trust in ourselves, in the infants, in the parents and the staff of nurseries everywhere, we will multiply trust, courage, creativity, and generosity and the effectiveness to bring about change on behalf of infants, families and professionals in intensive care everywhere. political agendas are made and carried by people. people all share in the same basic human heritage of empathy, caring, and responsibility for one another. nidcap must be a spark and an initiative that helps make the thousands of seeds of opportunities, to swell, sprout, and grow, even when seemingly buried deep in arid soils. together we are strong and will continue to forge an agenda of national and international change and growth. —heidelise als, phd developmental observer • �008 • � nurses acted in my place for me when i couldn’t be there. her primary nurse, pat, was excellent. all the nurses knew gabby. all the nurses knew me. i just will never forget these people. they made such an impression on my family and me. the honesty that they provided was especially helpful. say for instance, gabby was not having a good day. they would tell you that “this is not a good day for gabby. her cultures came back with an elevated white blood cell count. she hasn’t been breathing on her own. her oxygen level had been turned all the way up. she has only been breathing at 85%.” some nurses would just lay it down for you straight. however, during those times her nurse would stay there and would not leave until she felt comfortable enough to leave gabby with another nurse to take over. so like i said they went through it with you. everyone worked together. unfortunately she still wasn’t able to breath on her own for a long time. being on the oscillator is a scary thing. gabby progressed backwards. as she got bigger then she needed more oxygen, more for her lungs to open up. that was a scary experience. you would come in, the baby vibrating, the machine vibrating. one day it’s turned up, the next day it’s turned down. very scary. then also, because they’re so tiny, they’re not able to find veins as quickly as they can on a bigger baby. there were days when i would come in and gabby would have a needle in her arm, but that vein would soon collapse and the nurse would have to find a vein in her other arm. it was like: “oh man, you just keep sticking my poor baby.” my experience at the ronald mcdonald house was also wonderful. there was another parent, whose daughter was born two days from gabby. we went through this whole ordeal together. we would call each other. “hey, are you going to the ronald mcdonald house this weekend? “yes.” we would connect there. we would go sit with the girls. hold the girls. do whatever we needed to---kangaroo. my experience was just so wonderful. i don’t know how else to describe it. it was just beautiful. after awhile, it got to the point where i was sort of like the lead parent for the new parents in the nursery. i would tell them: “you know you are going to go through a roller coaster and trust me you are going to have your ups and downs. don’t pay attention to the oxygen monitors because sometimes if your baby makes a sudden movement it may kick the lead off. when that happens the monitor will go beep, beep, beep. if you go through that, and if you are by yourself, and your family is not there to support you…..you need someone to talk to….. a shoulder to lean on….. a shoulder to cry on. i tried to be there for parents. i guess that’s my nature. i always kept other people in my thoughts, and their families in my thoughts, and their child in my thoughts. as i prayed for gabby, i prayed for others too.” life at home gary: when gabby first came home it was very interesting because she came home with a monitor. so it’s one thing to be in the hospital and be there with a monitor because you sort of become numb to all of the bells and whistles. when you’re at home with a monitor that’s a different experience. it would go off sometimes for basically no reason at all. we hated it. luckily she wasn’t on it long, but it was an adjustment. to be honest with you, gabby isn’t like a lot of others because she slept through most of the night. maybe once or twice we woke up at two or three in the morning to feed her, but for the most part, she slept through the whole night. it was a blessing. when she slept through the night then we could sleep at night, and then during the day, we took turns caring for her. gabby can be a handful. when you are alone with her, you have to keep up with her, because she’ll be into a whole host of stuff. the hardest part right now is catching up with her! she’s all over the place. she really is into everything, but it’s great. the most rewarding part is knowing where she came from and how hard it was for her and how much she had to fight and where’s she’s at now. donnisha: gabby is such a daredevil. everyone at cooper basically said that she was going to have a feisty personality. even as a baby, even when she was that small the staff would say: “oh gabby is going to be something.” and gabby is something. now, gabby will jump off the couch and bed. gabby has lots of personality. and they said that at cooper. in the beginning, all she could do was grunt. premature babies grunt a lot. even with all the grunting she did her personality shined through. and it kicks out definitely now, because she is talking. it really was a joy to watch the things that she did. and watch her develop and watch her get bigger. we were blessed to have gabby, as sparkling as she is… and with as much personality as she has. gary: right now it’s been difficult to get her to learn potty training. it may take some time. but really that’s not even a complaint, its just part of the process. i only went to work for part of the day when she was younger. then as she got older we started sending her to a daycare school with the other kids. there she advanced even more, she picked up so much from them. when they say children’s learning is like a sponge, gabby is like a sponge. she repeats everything you say and mimics you and she learns. she learns very fast. i have a son who is fourteen and a daughter who is eleven. gabby sees them all the time. they love her and she loves them even though she has started to drive them crazy. that’s her job. family voices continued from page 2 � • �008 • developmental observer what we learned gary: learn as much as you can so you can make informed decisions about your child’s care. i think that’s very important because sometimes we had to make decisions about whether we wanted this or that. there was a point around eleven days where gabby didn’t eat, the doctors and nurses were trying to figure out certain things about her care, and they were giving her all of her nutrients she needed but she wasn’t eating. after a while, i said, “wait a minute she’s not eating and i have a problem with that.” if you have a question, ask the doctors and nurses. get to know your nurses because the nurses are extremely important. the doctors come around, they make their rounds, they make their medical diagnoses and then they’re off to the next thing. the nurses are there providing that intimate care, that intimate bond all the time. so you get to know the nurses because they will share with you how your child’s doing on an every day level. the nurses tell you the baby responds this way when you get close or hold her. the baby likes this or the baby likes that or she was up all night. a nurse will tell you when people were coming in or out of the room, or whether gabby perked up or she looked up, or she let us know that she knows that she hears us, or whatever the case may be. so these are things that are important because you need that reinforcement when you go to be with your baby and go to hold her. you want to make sure that you establish that bond yourself. so learn as much as you can. the best thing to do is to have as much information as possible. gabby got to the point where i told donnisha one day when we came home “when gabby gets better you’ll know because she’ll pull that respirator out of her mouth.” the next day, she did pull that respirator out of her mouth. she did it twice and gabby got better. donnisha: listening to the doctor and participating with your child’s care is important. the more connection you have with your child, the stronger he or she will become. the more time you spend with your baby, the more you do your kangarooing, the more you participate with their care….this will help a lot. make sure that you do provide the baby with breastmilk, because that’s the best milk that you can provide for them at that time. eventually gabby latched on and it was the most wonderful experience. it was soooo beautiful. sooo wonderful. it really was. even her dad would say: “you’ve got to go pump for gabby, you’ve got to go pump, you’ve got to go pump.” towards the end it became difficult because she wasn’t there to make the milk come strong. so although i was pumping, it still wasn’t the same as her suckling and pulling it out. i went back to work in the process and it became difficult. also, you have to have family; you have to have that support system. if you don’t have family to help, seek support by networking with other parent groups. there are various groups and organizations that can help assist you in your time of need. especially at cooper, the nurses make the experience in the nursery more like a family than anything else. wishes for our daughter’s future gary: everything in the world. everything! it’s kind of difficult…..knowing where she came from and seeing her in that itty-bitty bed with red skin. she’s chocolate brown now but her skin was bright red then because her skin color didn’t come in yet. just remembering that…. i wish the world for her. i wish the world for her. any and everything she wants to do. donnisha: to have a prosperous life. i wish for gabby to strive for anything and everything that makes her happy. whatever goals she wants to attain, i will be there to help her. i will help her attain her goals because gabrielle is still a fighter. it’s surprising to me that the nurse at cooper said: “this one’s feisty.” gabby’s still the same way. she’s five times more feisty because she’s growing and is bigger now. i wish for gabby to attain any goal that she wishes to and mommy will be there to assist her and daddy will be too. —interview by deborah buehler, phd holding on to one another. developmental care in the moment developmental observer • �008 • � n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d in may 1998, a small group of nicu staff (catherine mambrini, head nurse, nathalie ratynski md and jacques sizun md) flew from france to denver, colorado to begin nidcap training. the training and extended discussion with joy browne were so positive that this core group decided to go on with nidcap implementation in brest. this trip was also an opportunity to meet the brussels team from st. pierre hospital and reflect on the best implementation strategies for europe. in november 1999, nathalie and jacques attended their first nidcap trainers’ meeting in vermont-a cultural shock! moving from the medical to the developmental perspective entailed a continuous reflective process as individuals and as a group. the american welcome was unforgettable and meeting the swedish team was a great support. nathalie ratynski completed apib certification in 2003 with deborah buehler, as her apib trainer, and became a nidcap trainer in 2004 with joy browne as her master trainer. the french nidcap center in brest opened in july 2004. it was the second such center in europe and at that time the first french-speaking center. training began first in the nicus of valenciennes, france, and then in the university hospital nicus in toulouse, france and tivoli, belgium. training then continued on to university hospital nicus in montpellier, france, with ever growing numbers of hospitals requesting future training. since the beginning of our nidcap work, the creation and development of the french nidcap center was supported by the dean of the medical school and the director of the hospital. in order to integrate the nidcap training with an academic perspective, the french nidcap center was created within the university department for continuous education and training. this department is in charge of the administrative components of nidcap training (contracts with hospitals, invoices, etc.). the french nidcap center is affiliated with the university hospital and the université de bretagne occidentale. the woman, mother and child department, directed by professor jacques sizun, has a referral perinatal center with 2500 deliveries per year and a pediatric and neonatal intensive care unit (pnicu) directed by dr. murielle dobrzynski (medical director) and marie-christine nagahapitiyé (head nurse). the unit is working very closely with this training center. its role is not only to provide the best care to preterm newborns, but also to be the vitrine or “showcase” of nidcap philosophy and practices in france. in order to coordinate and implement this developmental approach, a developmental nurse position has been created. sylvie bleunven-minguy, the first french nidcap-certified nurse, has been pleased to accept this role. each year the unit welcomes many delegates from france and abroad. one goal of the french nidcap center was to work on “changing the system,” at a regional and national level. the strategy was to contact and collaborate with national health agencies in order to share our experiences and to suggest nidcap as the best approach in caring for preterm newborns. contacts have been very positive during these past ten years. the haute autorité de santé (french national authority for health), whose mission is to improve quality of care in health care organizations, delivered the highest level of certification to the brest university hospital in 2006, with a special note on nidcap stating that it is “a successful and permanent action likely to cause the implementation of similar approaches in other hospitals.” in 2006, the agence régionale d’hospitalisation (regional hospital agency, affiliated with the ministry of health) included nidcap implementation into the 2007-2012 regional plan. in may 2008, the french nidcap center received the association nationale pour la formation permanente du personnel hospitalier (national agency for hospital continuous education) award. as the nidcap approach was perceived in the 1990’s by french professionals as “too american,” efforts were made to build a european network to facilitate contact between groups, to organize meetings and workshops, and to prepare multi-site trials. a grant from the european science foundation helped to create this network that consisted of the london, brussels, scandinavian, and netherlands nidcap centers. in december 2008, the third infant development in newborn intensive care meeting (idnic) will be conducted in paris and organized as a joint meeting with the french neonatal research group. ten years after the initial decision to implement nidcap, the brest team hosted the trainers meeting in combrit, in the south of brittany (october 2007). all attendees were provided a beautiful, quiet place to reflect and experience the special tastes and sounds of brittany. future challenges are to prepare a second nidcap trainer and to achieve nfi nursery certification. the french nidcap training center experience: 1998-2008: the first decade in brittany the brest nidcap team: sylvie minguy, isabelle lohou, blandine le guen, jacques sizun, béatrice kerleroux, nathalie ratynski, catherine delage with professor anand (university of arkansas for medical sciences, little rock, arkansas, usa), céline catelin (former fellow in brest, france, now a neonatologist in sherbrooke, quebec, canada), and tiziana testa (resident in turin, italy and brest, france). nathalie ratynski, md and jacques sizun, md 8 • �008 • developmental observer the neuroscience of skin-to-skin contact nils bergman, mb chb, mph, md for the last fifty years the focus of newborn care has been on survival, achieved through technological interventions, primarily focused on cardio-respiratory and nutritional support. the underlying assumption has been that the development of the brain was primarily determined by genetic maturation over time, and did not really begin in earnest until some time after birth. the neurodevelopmental needs of premature infants were therefore not considered, while their survival rate was improved. the quality of this survival has, however, not been good, and there is now increasing evidence that the brain requires care! “developmental care” is increasingly accepted as a good thing for newborns, premature or not. (while the nidcap approach provides very clear definitions about what the implementation of developmental care may mean, most people using this term are vague about what this actually entails). i will in this short article attempt to provide a simple but neuroscientifically based rationale for optimal neurodevelopment, central to which is maternal-infant skinto-skin contact. brain development begins much earlier than previously recognized. at 20 weeks post-menstrual age (pma) all brain structures are in place and functional to some degree. neurogenesis begins very soon after conception, but surprisingly, is essentially completed at 28 weeks pma. the 100 billion neurons that have been formed have an inbuilt tendency to be eliminated; in order to survive they need to “fire and wire.”1 the “firing”comes from sensory stimulation, an obvious statement perhaps, but fundamentally important, and long neglected. for any specific pathway there is a salient stimulus, as well as a critical period, or window of expectation. however, brain pathways are integrated circuits, and optimal neurodevelopment requires integrated quality sensory stimulation.2 absence of stimulation during such periods results in failure of the pathway to wire.3 in the uterine environment, some fetal sensations are fully operational: sound, smell, and position. however, other fetal sensations are muted, sight in particular. in order to achieve firing and wiring of such pathways, rem sleep periods are responsible for achieving orchestrated “spontaneous synchronous firing” of all sensations.4 in past research, blocking such firing in visual pathways resulted in blindness, and resulted in the phrase: “cells that fire together, wire together, and those that don’t, won’t.”1 but the “wiring” part of the brain connections are dependent on rem sleep in other ways also, and on the full sleep cycle.4 rem sleep cycles with four stages of non-rem sleep in approximately one hour rhythms, beginning in the last trimester, and is fully evident at term. brain wiring occurs during this cycle in three distinct phases: acquisition during rem sleep or being awake, consolidation (also called pre-consolidation) during nrem stage 4, and memory formation (also called consolidation) in the early phase of the next rem period. a full sleep cycle is required to achieve connected neuronal pathways. disruption or deprivation of rem sleep increases neuronal cell death, and reduces final brain mass. birth is the most critical event for all mammals. the organism has three major tasks to accomplish … transition, homeostasis and homeorhesis. in transition the organism must suddenly change its entire cardio-respiratory functionality, while at the same time maintaining its homeostasis (i.e., its internal total metabolic balance). homeorhesis (greek for “similar flow”) is more demanding than just balance in a stable state; the organism is also developing along a trajectory, which it must maintain. it is the brain’s developmental trajectory which is paramount. in the past, the human newborn was regarded as helpless and incompetent. there is in fact astonishing neurological competence wired into the fetal brain in preparation for birth. neither the competence, nor the conditions for it, have been well understood. the word “critical period” is not well accepted by the medical profession, but birth is undoubtedly a “critical event.” the competence of the mammalian newborn is dependent on its brain circuitry. brain function is dependent on appropriate sensory stimulations. throughout evolution, this was provided by the maternal milieu. every mammal studied attests to “highly conserved perinatal behaviours,”5 in which the newborn plays the primary role in initiation and maintenance, with subsequent elicited responses from mother. it is mother’s presence and the stimulations that she provides which are essential for the behaviours which lead to successful transition and subsequent adaptation to extra-uterine life.6 that adaptation will developmental observer • �008 • � immediately require the continued provision of “basic biological needs”of warmth, nutrition and protection. it may be useful to distinguish that these are needs for the body, as opposed to the brain which needs stimulation. maternal-infant togetherness ensures provision of warmth, nutrition and of protection. the critical behaviour that brings these together is breastfeeding. breastfeeding is at the same time an umbrella providing every sensory modality to the brain’s developing pathways.7 thus the mother’s presence provides both basic biological and neurological requirements. primates deliver young which are biologically immature, and maternal-infant skin-to-skin contact is the rule, not least due to thermal requirements. skin-toskin contact stimulates neural pathways that reach the amygdala directly (along with smell), without passing through higher brain centres.8 these may be seen as primary regulating sensations, decribed under the “continuity hypothesis.”9 the amygdala is described by le doux as being at the core of the “emotional brain.”10 from the amygdala autonomic regulation of all body systems is achieved (downward function), and approximately 200 randomized controlled trials on skin-toskin contact on premature human infants attest to this regulation. from the amygdala, key pathways fire and wire to higher brain centers (upward). one of these is the amygdala prefrontoorbital cortical pathway,8 which links the emotional core of the brain to the “behavioural activation system” of the brain,11 which determines future “approach versus avoid” tendency. this pathway is specifically “fired” by skin-to-skin contact that can later be measured in right frontal eeg assymmetry, a measure of physiological and psychological resilience.12, 13 this skin-to-skin contact may be at the core of subsequent attachment behaviour and also has profound effects on regulating the sleep cycle, ensuring adequate deep sleep for nrem4 and spaced periods of rem.14 thus the effect of maternal-infant skin-to-skin contact is one of “dual coding,”15 achieving simultaneous physiological regulation and emotional (or psychological) attachment. it may be the basic building block of future capacity to achieve “stability through change,” schore’s definition of health.8 maternal-infant separation significantly disrupts the processes described above. sleep cycling is absent during incubator care. but, since separation is accepted as “normal,” the physiological state it produces is regarded as normal. in fact, the response of the amygdala is to ensure a survival state, homeostasis without homeorhesis. schore describes this in adults as “hyperarousal dissociation.”3 in early primate research, this was called “protest despair” in separated infants.16 that this applies to the human newborn needs to be stated, even if obvious. neuro-cognitive development (as in bayley,17 or iq) has been the basis for measuring the long term impact of modern newborn care, specifically in premature infants. i would suggest on the basis of this neuroscience that these are invalid measures. the processes that are disrupted are regulation and attachment, and the latter leads primarily to emotional and social development, not cognitive. emotional and social intelligence would be valid measures of developmental care.15 social and emotional intelligences do in fact provide a platform for higher cognitive functions, and cognitive functions almost certainly are improved, albeit indirectly. but “iq” is a complex and diffuse concept, and may be seen as a remote downstream effect. there is no direct cause-effect between these intelligences and cognitive capacity. high iq may even be a compensatory mechanism in some emotionally deprived individuals. from an evolutionary perspective, the primary objective of the primate perinatal period was to achive emotional and social competence. optimal neurodevelopment requires that our care and technology is applied (and adapted as necessary) so as to ensure there is no separation of the mother-infant dyad. maternal-infant separation is, unfortunately, the norm in our health system. maternal-infant skin-to-skin contact, not separation, is the norm of our biology. references: 1. shatz cj. the developing brain. sci am 1992 september;267(3):60-7. 2. mccain hn, mustard jf. neuroscience and early child development. in: reversing the real brain drain: early years study. 25-52. 1999. toronto, on, canada, ontario children’s secretariat. ref type: generic. 3. schore an. the effects of early relational trauma on right brain development, affect regulation, and infant mental health. infant mental health journal. 2001; 22 (1-2): 201-69. 4. graven s. sleep and brain development. clinics in perinatology. 2006; 33: 693-706. 5. keverne eb, kendrick km. maternal behaviour in sheep and its neuroendocrine regulation. acta paediatr suppl. 1994 june; 397: 47-56. 6. alberts jr. learning as adaptation of the infant. acta paediatrica (oslo, norway: 1992). 1994; suppl 397: 77-85. 7. gallagher w. motherless child. the sciences. july/august, 12-15. 1992. ref type: generic. 8. schore an. effects of a secure attachment relationship on right brain development, affect regulation, and infant mental health. infant mental health journal. 2001; 22 (1-2): 7-66. 9. anderson gc. touch and the kangaroo care method. in: field t, editor. touch in early development.hillsdale: l earlbaum; 1995. p. 34-51. 10. le doux j. the emotional brain: the mysterious underpinnings of emotional life. new york: simon & schuster paperbacks; 1996. 11. amodio dm, master sl, yee cm, taylor se. neurocognitive components of the behavioral inhibition and activation systems: implications fdor theories of self-regulation. psychophysiology. 2008; 45: 1-11. 12. diego ma, field t, jones na, hernandez-reif m. withdrawn and intrusive maternal interaction style and infant frontal eeg asymmetry shifts in infants of depressed and non-depressed mothers. infant behavior & development. 2006; 29 (2): 220-9. 13. jones na, mcfall ba, diego ma. patterns of brain electrical activity in infants of depressed mothers who breastfeed and bottle feed: the mediating role of infant temperament. biological psychology. 2004; 67(1/2): 103-24. 14. ludington-hoe sm, johnson mw, morgan k, lewis t, gutman j, wilson pd et al. neurophysiologic assessment of neonatal sleep organization: preliminary results of a randomized, controlled trial of skin contact with preterm infants. journal of the american academy of child & adolescent psychiatry. 2006; 45 (12): 1455. 15. greenspan si, shanker sg, phil d. the first idea. da capo press; 2006. 16. harlow hf, suomi sj. social recovery by isolation-reared monkeys. proceedings of the national academy of sciences. 1971; 68 (7): 1534-8. 17. bayley n. bayley scales of infant development-ii, the psychological corporation. 2001. kangaroo mother care i don’t remember when i first heard about “kangaroo care.” i had worked in the intensive care nursery since 1988, but my first encounter with the term “kangaroo care” was in the articles that i read during my graduate nursing program in 1992. what struck me was not only how simple the concept was, but also how it was discovered. kangaroo care developed out of necessity in a country where the ability to care for all the premature infants in the hospital was hampered by lack of equipment. it was a measure that, although carefully and thoughtfully accomplished based on what is “natural,” was nevertheless born from a desperate need, not a result of controlled research. since then research with kangaroo care has looked at a variety of aspects, from documenting the safety for high risk infants engaged in kangaroo care, to examining the emotional benefits to mothers who participate, to identifying the physiological processes and mechanisms of kangaroo care that appear to facilitate development of the infant.1,2 there is still much to research and to understand. in the nicu, we also encourage fathers to participate and recognize how beneficial this kind of holding is to fathers and their infants. however, the initial concept, perhaps more accurately called “kangaroo mother care,” where the mother is the source of continuous warmth and nourishment to the infant, is the subject of this reflection. many people object to the term “kangaroo care,” saying that it denigrates the unique humanness of the infant/parent relationship. that it makes light of, or makes too “cute” an activity that has profound emotional and physical consequences for both parties. perhaps because i am married to an evolutionary ecologist, i see this reference to our mammalian heritage as natural, not offensive. to me, the term also reflects an accurate perspective of this activity. anthropologists and biologists recognize the developmental phases that mammalian species move through in their transition from infant to adulthood, which can be divided into: the uterine phase, the breast phase and the social/community phase.3-5 human infants are an unusually dependent mammalian species, born before they are well developed. this is thought to be an evolutionary compromise because a more mature brain would not be able to be delivered in the woman whose pelvis has adjusted to bi-pedalism. so the infant is born while still immature and must spend significant time with the mother staying warm and being provided nutrition while they complete the developmental phases that in other more precocial species are accomplished in utero. like marsupials, who very competently find their way to their mother’s teat, and bask in the warmth of her pouch, so the human infant is very competent to continue physical, cognitive and social development while being supported by the mother during extensive bodily contact. this extensive “breast phase” is still experienced in many non-technological communities, but there has been a cultural shift in industrial societies where the “breast phase” is shortened or non-existent. while physical survival is possible without the mother’s milk and warmth, there can be severe emotional and social consequences, some of which we are just beginning to recognize.6 technology in the nicu has increasingly become more sophisticated in supporting the physical well being of premature infants. can we now begin to acknowledge that these vulnerable infants are the ones that need the most contact with their mother? kangaroo mother care, where the mother serves as the source of warmth and nutrition in a hospital setting, has been successful in promoting positive outcomes of low birthweight infants in a number of countries where options are limited, although larger, randomized studies are still needed to document these effects.7,8 perhaps part of our dilemma in the united states is our inability to see mother and child as an inseparable dyad, in our failure to acknowledge this “breast” phase of development. our workplace culture has long been a source of frustration for those n i d c a p r e f l e c t i o n s jean powlesland, rn, ms 10 • �008 • developmental observer developmental observer • �008 • 11 women who wish to ensure their employment, yet still meet the needs of their small, nursing infants. frequently, this dichotomy occurs much earlier. for the healthy, newly delivered infant, the mother and infant stay together and never need to be separated. if the mother goes home from the hospital, and the baby must stay behind, our expectations change. healthcare systems do not acknowledge the unhealthiness of the separation, and often it is the most at risk families that cannot manage to overcome it. we have evidence that kangaroo care will improve the development of the premature infant and may improve the parent/infant relationship, and that separation of mother and child may be damaging.1,2, 9,10,11 so why is there so little support for parents to be continuously available to their hospitalized infants? a neighboring hospital has a very aggressive breastfeeding policy that makes it a practice of informing the mothers of premature infants that they have no choice but to provide milk for their infants, because it is clearly the best nutritional option. should we make kangaroo care mandatory for premature infants who are in the process of forming the foundation of their emotional and cognitive lives? i am cast back to when my daughter, miriam, was born seven weeks prematurely many years ago. i was admitted for severe epigastric pain and very suddenly needed an emergency c-section. i became an educational object for the obstetric residents, as they were brought by in groups and lectured on the relatively newly named “hellp” syndrome that i had. miriam came into the world a few minutes shy of christmas eve, crying strongly as she was handed to the pediatrician, her arms and legs waving frantically in the air. as she was weighed and examined, her crying subsided into a rhythmic grunting, which meant that she was destined for the special care nursery. my arms were strapped down to the operating room table, and just before miriam was transferred out, she was brought close to my face, where i could only awkwardly nuzzle her head with my nose and cheek. miriam was in the special care nursery for only a few hours. i, however, stayed in labor and delivery for a day and a half, heavily sedated with magnesium; my arms oozing blood from the frequent blood draws to monitor my falling blood counts. it is only in hindsight that i realize how traumatizing this experience was, and how battered and bruised i felt, both emotionally and physically. my pregnancy had been disrupted, and i had become truly “sick” and afraid of my body. the first time i felt at peace was when miriam was brought to me as she was being transferred from the special care to the normal newborn nursery. she was placed on my chest, and though my magnesium intoxicated brain wasn’t processing all that the nurse was telling me, what came through was the warmth of her skin, the feel of her breath as her body rose and fell, and her little squeaks, squeals and squirms as she settled down on me. the nicu nurse in me was trying hard to think of the questions i should be asking, but my sedated nervous system could not formulate them. however, the mother in me was reassured, feeling through my skin and the core of my being that my baby was okay. since then, i realize how much that primal reassurance meant to me, and i believe that babies too need that comfort from closeness with their mother. this contact is the closest the premature infant can get to regain the “uterine phase” while transitioning to the “breast phase.” this is what is expected, and what is needed. as nicu professionals, we need to explore ways to make it an expectation of care for all premature infants. references: 1. dodd vl. implications of kangaroo care for growth and development in preterm infants. journal of obstetric, gynecologic and neonatal nursing 2005; 34 (2): 218-232. 2. browne, jv. early relationship environments: physiology of skin-to-skin contact for parents and their preterm infants. clinics in perinatology 2004; 31: 287-298. 3. hofer ma. early social relationships: a psychobiologist’s view. child development 1987; 58: 633-647. 4. mckenna j, ball h, gettler l. mother-infant cosleeping, breastfeeding and sudden infant death syndrome: what biological anthropology has discovered about normal infant sleep and pediatric sleep medicine. american journal of physical anthropology 2007; 134(s45): 133-61. 5. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology 1997; 21 (3) 178-189. 6. schore an. attachment and the regulation of the right brain. attachment and human development 2000; 2 (1): 23-47. 7. cattaneo a, davanzo r, bergman n, charpak n. kangaroo mother care in low income countries. international network in kangaroo mother care. journal of tropical pediatrics 1998; 44: 279-295. 8. conde-agudelo a, daiz-rosello jl, belizan jm. kangaroo mother care to reduce morbidity and mortality in low birthweight infants. cochrane database of systematic reviews 2008. 9. tessier r, cristo m, velez s, giron m, ruiz-palaez jg, charpak y, charpak n. kangaroo mother care and the bonding hypothesis. pediatrics 1998; 102: e17. 10. hofer ma. hidden regulators in attachment, separation and loss. monographs of the society for research in child development 1994; 59: 192-207. 11. feldman r, eidelman ai, sirota l, weller a. comparison of skin-to-skin (kangaroo) and traditional care: parenting outcomes and preterm infant development. pediatrics 2002; 110: 16-26. 1� • �008 • developmental observer n i d c a p p r o f i l e dorothy vittner, rn, msn and joy v. browne, phd, cns there could be no better spokespeople for parents than these two unique and especially talented people. both vicky and tracy have had up close and personal experiences with their children and grandchildren in nicus. they are each national leaders in the field of early intervention and have made their mark on education and advocacy and sensitive care giving for infants and children who interface with the health care system. their voices and contributions on the nfi board will be critical to the future directions that the nfi pursues. vicky youcha is currently leading a multimedia project focused on preventing, treating, and living with traumatic brain injury, for a public broadcasting station in the washington d.c. area. she compares her present efforts with the technical world of the nicu where life and death decisions may be made in an instant often engulfed by emotions. vicky is an experienced “two timer” in the nicu. her daughter and grandson both began their lives in an nicu. despite her role as developmental specialist and vast knowledge of parent-infant development and its importance, the nicu was a difficult place to navigate. she continually uses her own past experiences to support and strengthen her daughter’s relationship with her grandson by encouraging techniques such as kangaroo care holding. she expresses with passion how the connections developed during that critical period in the intensive care nursery have strengthened attachment between her daughter, son-in-law and her grandson. vicky recognizes the need to continuously support “parents to be parents” while their infants are in the nicu and articulates her perceptions of how parenting can have a direct impact on improving the outcomes of infants born prematurely. vicky’s first encounter with nidcap came when dr. heidelise als presented at george washington university (gwu) in the early 1980’s about the infant’s experience and the impact the sensory environment had on the developing baby. these presentations validated her own thoughts as she parented her daughter in the nicu. this encounter strengthened her resolve to support families in developing strong relationships with their infants and to develop systems to support families to be an integral part of the health care team. as a professional, vicky has had extensive knowledge and experience with early childhood development and special education. she has had a long history as a developmental specialist, as well as directing an early intervention program at gwu. she received many national grants focused on including children with special needs in regular early childhood settings. vicky has published numerous articles on national policy recommendations and guidelines for individualized family service plans and implementation resources along with the training manual for head start regulations for children with disabilities. in her work at zero to three, vicky directed several projects. one was aimed at helping juvenile and family court judges improve outcomes for infants and toddlers. another was shepherding the leaders for the 21st century program for zero to three fellows, where she encouraged and exemplified leadership in the infant and toddler field. vicky is known to take adventure trips to remote areas to kayak and ski. she is a tiny but powerful force to be reckoned with, and is known to take on mother nature by storm, and with a smile. she also cuts a mean rug with swing dancing. but her passion is babies—not only her grandson, but also all babies who come to the world with special needs. her passion and treasure chest of knowledge about infants and their families spill out with each story she shares. tracy price-johnson is an accomplished public speaker, educator and advocate for families. her daughter hayley was born and cared for in a nicu for her first three and a half months after her birth and developed significant disabilities. as hayley grew older, tracy used all her professional and newly found parenting skills to increase public awareness and advocacy in support of family centered care principles for infants and children in the health and education systems. tracy continues to teach at the university of colorado, denver school of medicine, jfk partners university continued on page 18 vicky youcha, edd, and tracy price-johnson, ma who can better advise professionals in the nicu than people who have experienced the ups and downs of the nicu roller coaster ride? the nidcap federation international (nfi) recognizes the unique contributions that experienced parents can provide and has recently added two new family members, vicky youcha and tracy price-johnson, to the board of directors. developmental observer • �008 • 1� s u p p o r t i n g fa m i l i e s melissa r. johnson, phd attachment theory: a natural fit with nidcap practice a key goal in the work of all nidcap professionals is supporting the relationship between parents and their infant. the synactive theory1 provides a powerful theoretical basis for understanding the infant in the context of the unexpected environment of the nicu. many nidcap practitioners have found attachment theory to be another valuable resource. like the synactive theory, it combines rich and complex theory with a large body of empirical support.2 these two theories also have in common their deeply humanistic worldview and a commitment to relationships as a core value in all clinical work. they are mutually supportive in guiding work with parents in the nicu, and in focusing on parental relationships with their infants as well as with their infants’ caregivers. in addition, these theories share a firm grounding in ethology and evolutionary biology1, 3 and a profound respect for the importance of patient, naturalistic observation of infants in guiding theory and practice.4,6 they also offer a framework for understanding how the physical and interpersonal environment influences the immature developing human brain, shaping its structure and function, and thus help to determine the individual’s future.7, 8 an understanding of attachment theory can support the clinical goals of nidcap developmental practitioners and guide interactions in the nicu in a number of ways. first, it is important to note that attachment relationships include those between parents and caregivers as well as those between children and parents. bowlby 3 and subsequent researchers are clear that attachment behaviors, involving the seeking of proximity to figures seen as stronger and able to help in stressful situations, continue throughout life. as parents strive to cope successfully with the overwhelming emotional and physical challenges of having an infant in the nicu, staff who are knowledgeable and powerful in this environment may be seen as attachment figures able to provide comfort and safety to parents. parents who receive this kind of support may then be able to rally their own strengths on behalf of their infants. staff who understand this role, and are comfortable with meeting the attachment needs of new parents dealing with the crisis of preterm birth, have a powerful opportunity to facilitate the parents’ ability to develop the strong attachment relationships with their infant that will help ensure their optimal outcome. this may be seen clinically in situations where parents are perceived as being needy, lacking trust in staff, or appearing fearful in handling their infant. in their role of supporting the developing parent-infant relationship it is extremely important that staff: 1) are aware of their own feelings toward the infant, and strive to facilitate the relationship between the parent and the infant, rather than allowing their own empathetic connection to the infant supplant the parents’ primary relationship to their child; and 2) seek reflective guidance from a psychiatrist, psychologist, or a consultant with a clinical mental health background, an essential support as the staff strive to accomplish these goals. with the reflective guidance and support of a clinical mental health professional, nurses or other staff may begin to assess and address the underlying concerns haunting the parent, as well as the nature of the parent’s past and present attachment relationships. this may provide the kind of support that meets the parent’s appropriate needs for attachment figures in this emergency. in practice, this appears as: verbal and non-verbal acceptance of needs; offering the time and interest to share and process the level of disclosure comfortable for the parent; joining with the parents in their efforts to understand their infant’s needs (e.g., close observation of the infant’s behavioral signals); supporting the parents in their role of providing care to their infant (e.g., skin-to-skin holding, breastfeeding); and facilitating their active participation in the decision-making process. this effort flows naturally into support of the parent-child relationship. the parent’s drive to establish and maintain physical and emotional closeness with the infant, and the infant’s increasingly competent efforts to orient toward the parent’s voice, body and face, are facilitated when the parent feels secure and connected themselves. when parents worry aloud, as some do, whether they are “bonded” with their infants, attachment concepts suggest several helpful responses. for example, one can honestly assure parents that the very fact that they are asking that question is an indicator of developing attachment. some parents may think and worry about their infant when they are not in the nursery, or they may think that it “doesn’t feel right” to leave their infant behind when they go home. many parents may experience these feelings, which again are indicators of parental attachment with the infant, predicting future blossoming of infant attachment to the parent. specific practices and examples discussed above, however, are less important than integrating an understanding of the principles of attachment into the world view and underlying continued on page 18 1� • �008 • developmental observer inga warren, dip cot, msc c u r r e n t d e v e l o p m e n ta l r e s e a r c h breastfeeding & development there is growing evidence that breastfeeding enhances neurodevelopment. claims of benefits for breastfeeding have often been disputed on the grounds that mothers from more privileged socioeconomic backgrounds are more likely to breastfeed, thus skewing the outcomes. a cluster randomization trial1 involving 31 belarussian maternity hospitals, enrolled 17,046 healthy breastfeeding infants, and included an intervention group that received breastfeeding promotion modeled on the baby friendly initiative.2 breastfeeding uptake was significantly higher in the intervention group compared to the group where mothers were left to follow their own inclination, as were scores on the wechsler abbreviated scales of intelligence3 at six and one-half years of age. teachers also evaluated academic achievements more highly in the intervention group. the randomization and sheer size of this study strengthen arguments in support of an independent effect of breastfeeding on development. whether or not this is due to the ingestion of breastmilk or increased closeness between mother and infant would be difficult to demonstrate. much of the evidence for enhanced neurodevelopment relates to term infants but vohr et al.4 followed up 1035 extremely low birth weight infants on 15 sites to 18 months corrected age and with multivariate analysis, adjusting for confounders such as socioeconomic status, confirmed a significant independent association of breastmilk on the bayley scales of infant development-ii5 (i.e., mental, psychomotor and behavior rating scales). the more breastmilk the infants ingested the stronger the association. feldman and eidelman6 found a direct association between breastmilk and neurobehavioral organization in preterm infants and postulated that there may be a link between maternal depression, lower quantities of breastmilk and poorer developmental outcomes. the health benefits of breastmilk for preterm infants are well established and include protection from necrotizing enterocolitis (nec),7 which may require intensive care treatment and surgery, thus exposing the infant to the developmental risks associated with severe illness, restricted nutrition and possibly the iatrogenic effects of intensive care. avoiding nec is therefore likely to reduce the risk of negative developmental outcomes. breastfeeding has well known health benefits for mothers too. while breastfeeding rates for preterm infants admitted to newborn intensive care units are often assumed to be low in comparison to those for the healthy term newborns, this may be deceiving. a study of the pregnancy risk assessment and monitoring system (prams)8 in 27 us states over four years found that when the data was adjusted for multiple confounders, such as maternal race, age, education and antenatal care; nicu admission actually appeared to have a beneficial effect on breastfeeding.9 anecdotal reports from nidcap training centers suggest that a higher proportion of infants may be discharged breastfeeding from the newborn intensive care unit, than from the maternity unit in the same hospital. warren et al.10 found that when breastfeeding support was combined with developmental care, breastfeeding increased considerably; at discharge 83% were breastmilk fed although 8% were taking breastmilk from bottle or cup; at that time the maternity unit was achieving similar rates to the national average of 65%. bottle feeding may be offered on the assumption that it will accelerate discharge. profit et al.11 reports a mean age on discharge from the newborn intensive care unit of 36.3 weeks corrected age for infants born between 30 and 35 weeks gestation in the united kingdom (1998-99) and 35.9 weeks in california (2001-2003). nyqvist12 described breastfeeding development in a diverse but small (n=15) number of much younger babies (born between 26 and 31 weeks of gestational age) in a swedish nursery that provided skilled breastfeeding support, facilities for rooming in and an individualized developmental care approach. she reports a median age of 35.4 weeks corrected age at discharge from hospital to home. warren et al.10 in a retrospective study collected data on all infants born in one year before 35 weeks gestational age (n=60; range 24 – 34 gestational age), regardless of complications, in a nursery that favored an individualized developmental care approach. fully breastfed and other breastmilk fed babies were discharged at a median age of 36 weeks. these two studies suggest that the potential for lactation support combined with developmental care to facilitate early discharge from hospital for very preterm infants is worth further investigation. newborn intensive care units often offer bottles before the breast and may suggest that this should begin at around 33-34 weeks when maturation of oral motor skills makes suck feeding relatively safe. nyqvist12 suggests that breastfeeding can be presented to the infant much earlier, provided appropriate support is offered. she describes breastfeeding behavior in infants born between 26-31 weeks of gestational age, and reports that infants as young as 29 weeks were rooting and that by 31 32 weeks corrected gestational age some of these infants were competently latching on, with long sucking bursts and repeated swallowing. a common misconception holding back breastfeeding is the idea that women will feel pressurized and stressed by this expectation. sisk et al.13 found that lactation counseling given to mothers of very low birth weight babies increased lactation initiation and breastfeeding without increasing maternal stress and anxiety. kavanagh et al.14 used semi-structured interviews with mothers of preterm infants to explore their perceptions of breastfeeding. these mothers described specific emotional advantages that they related to breastfeeding, indicating that the rewards were worth the effort. clearly, the research cited within this article demonstrates the importance of breastfeeding support within a developmental care program because it may enhance developmental outcomes, promote early discharge, and be an advantage for mothers as well as their infants. references on page 18 d e v e l o p m e n ta l r e s o u r c e s kathleen a. vandenberg, phd developmental observer • �008 • 1� this column provides our readers with current information regarding developmental resources related to nidcap. articles 1. als h & butler s. newborn individualized developmental care and assessment program (nidcap): changing the future for infants and families in intensive and special care nurseries. early childhood services. 2008; 2 (1): 1-19. 2. lawhon g & hedlund re. newborn individualized developmental care and assessment program (nidcap) training and education. journal of perinatal and neonatal nursing. 2008; 22 (2): 133-144. 3. smith km, butler s & als h. newborn individualized developmental care and assessment program (nidcap): changing the future for infants and families in intensive and special care nurseries. italian journal of pediatrics. 2007. book chapters als h, & butler s. screening of newborn and maternal wellbeing. in: haith m & benson j (eds). encyclopedia of infant and early childhood development. amsterdam: elsevier. 2008; 3: 66-78. books 1. disorders of behavioral and emotional regulation in the first years of life, early risks and intervention in the developing parent-infant relationship. mechtild papousek, michael schieche, and harald wurmser, editors. translated by kenneth kronenberg. 2007. zero to three. recently translated, this book provides an in depth overview of emotional regulation from birth to three years of age. a thorough review of excessive crying, sleep disorders, feeding disorders and behavioral difficulties is provided. evaluation of behaviors and therapeutic approaches are discussed in detailed case studies. 346 pages. $49.95. 2. early development and the brain: teaching resources for educators. linda gilkerson and rebecca klein, editors. 2008. zero to three. this is a nine-unit curriculum that translates scientific research into practical suggestions to help early childhood professionals understand the link between caregiving and brain development. topics include brain structure and function, language, and the effects of stress and maternal drug use on brain development. cd-rom includes powerpointtm slides and course handouts. 794 pages. $359.99. conferences 1. developmental interventions in neonatal care conference: october 1-4, 2008, denver, colorado, usa. sponsored by contemporary forums. the preconference (october 1) offers presentations on individualized developmental care designed to highlight developmental intervention practices. topics include essential concepts in developmental care, management of infant behaviors, development of feeding skills in preterm and term infants, and the role of movement and posture in promoting physiology. the main conference (october 2-4) offers plenaries and concurrent sessions covering current research updates, practical strategies for providing effective developmental care and applicable medical information. for more information, please visit the conference website at: www.contemporaryforums.com. 2. infant development in neonatal intensive care (idnic): “closing the gap between research and practices.” december 12-13, 2008, paris, france. although the quantity of research on positive impact of non-pharmacological strategies on outcome in preterm neonates has expanded, the gap between research and practice remains wide (pain control, early intervention, breast milk). the goals of this conference are to explore reasons for this gap and to offer strategies for bridging it. please visit the conference website at: www. info-congres.com. 3. the 22nd annual gravens conference on the physical and developmental environment of the high risk infant: january 21-24, 2009, clearwater beach, florida, usa. this conference focuses on developmental care and the impact of the physical environment on premature and high-risk babies. this year’s focus is on the psychological and physiological interactions in the nicu. the march of dimes family support summit, which will address current application of family support services in nicus, will be held in conjunction with the gravens meeting. for more information, please visit the conference website at: www.cme.hsc.usf.edu/hri09. 4. the 4th international conference on brain monitoring and neuroprotection in the newborn: february 20-22, 2009, orlando, florida, usa. this conference focuses on new strategies and technology in the assessment of early brain function. it is intended to bring the most current research and application in clinical practice to a forum where the results can be translated for use by clinicians. for more information, please visit the conference website at: www.cme.hsc.usf.edu/brain09. 5. the fragile infant feeding institute (fifi): spring of 2009 (specific date and site to be determined). this conference focuses on the development of feeding in preterm and high-risk infants. using the nidcap model, this four and a half-day conference teaches evidence based interventions using individualized assessment and supportive strategies applied to clinical practice for in-hospital and community professionals. to have your name placed on a distribution list for first come-first served selection, please contact joy browne, phd at: browne.joy@tchden.org. 1� • �008 • developmental observer the newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.com. the assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.com for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. 6. multidisciplinary family centered care conference: the fourth international conference on patient and family centered care: august 17-19, 2009, marriott hotel downtown, philadelphia, pennsylvania, usa. this conference is sponsored by the institute for family centered care and will address innovative programs dedicated to promoting partnerships between patients, family and health care professionals and health care systems. for more information, please visit the conference website at: www. lstreeter@iffcc.org. recognition of developmental care competency national association neonatal nurses advanced competency in developmental care the purpose of this program is to promote excellence in professionalism by acknowledging the healthcare providers who have acquired a body of knowledge and expertise in the field of providing developmental care. please see: www. nann.org/-8acdc.html. we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to diane ballweg at: developmentalobserver@nidcap.org. from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org. developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor gretchen lawhon, rn, phd associate editor sandra kosta, ba text editor d e v e l o p m e n ta l r e s o u r c e s developmental observer • �008 • 1� dear editors, i have completed my thorough reading of the recent do and wanted to tell you all how wonderful i thought it was. the advanced practicum piece is excellent and will guide all of us. i am sure that very soon we will be wondering how we lived without it. i was impressed with what a clear overview of many aspects of individualized developmental care and nidcap that is presented. the personalities, the essence of who and what we are really comes through. as usual, i am very proud to share it with potential funders and colleagues. thank you all for all of your hard work--it is quite amazing. and gretchen and rodd, congrat ulations on your recent publication in the journal of perinatal and neonatal nursing on nidcap. this is an excellent piece for nurses and nicu staff as well as managers and organizers. i have sent it all around the university of california at san francisco. its publication is very helpful for the work we are trying to generate here. thank you for helping us elucidate and articulate the core of what we do. sincerely, kathleen vandenberg, phd dear editors, presently as a nidcap trainee as well as the physical therapist dedicated to the nicu and also the chairperson of the nicu development council, i am embarking on the nidcap advanced practicum towards certification. having completed ten systematic nidcap observations of premature infants during a care or procedure has prepared me to progress to the next phase. in light of beginning the process of the advanced practicum (ap), i felt compelled to share my reflections of the process thus far. for me the road to become nidcap certified began one year ago. gretchen lawhon came to st. luke’s hospital in bethlehem/allentown, pennsylvania to provide the initial knowledge, guidance, and instruction on how to perform the nidcap observations of premature infants. filled with excited anticipation i began to observe changes in infants that i had never observed. from this initial experience, i learned to develop a better understanding of premature infants’ methods of communication noticing physiologic and behavioral changes of infants before, during and after their care. from this point on my role became that of the translator of the infants’ needs and dislikes for their caregivers. taking the time to exclusively observe an infant without performing an intervention is a valuable opportunity to fully embrace the infant’s stressors and likes. heightening my attentiveness to infants’ reactions taught me to stop what i am doing when i see small signs of stress. this gives the infant a chance to recover and manage his/her care to minimize stressful procedures. despite over thirty years of working with infants of various ages in center-based programs and in the infants’ homes, i found that there is a tremendous amount to learn and to marvel at when discussing infant growth and developmental achievements. i look forward to developing a special relationship with the infant and family during my ap experience by meeting with them weekly or biweekly. with this practicum i look forward to being able to share my findings with the parents and caregivers. during that time i will have a chance to integrate what i have learned and be creative with the communication baby booklet. despite working with infants for many years in their homes with early intervention, this will be my first experience going from up to 72 hours post birth to the home visit. i look forward to implementing individualized care and hopefully alluring the staff to embrace this concept. providing suggestions for the family and staff will be challenging but extremely motivating. throughout this practicum there will be opportunities arising to monitor changes and improvements. additionally i have the distinct pleasure of evaluating my soon to be “practicum infant” in the developmental follow up clinic after discharge. this will provide an opportunity for a longitudinal observation. the ultimate goal is to strengthen the relationship of the infant with his/her parents. the ap will help me to enhance my observations and be able to impart my findings to minimize stressful situations with the infant and develop a family centered atmosphere. the infant’s development and neurologic organization can be enhanced through ongoing nurturing care. i feel that the following kahil gibran quote speaks very well of what we try to strive for with the nidcap practicum: “progress lies not in enhancing what is, but in advancing toward what will be.” sincerely, maureen rinehimer, pt, ms, mhs (e i certified) dear editors, the developmental observer is a triumph. i enjoyed the spring edition very much -interesting, informative and highly readable. i hope all my trainees are signed up for it, if not they are missing out. i know how much work (well probably i don’t!) this must have taken and you should be very proud of the result. inga warren, dip cot, msc l e t t e r s t o t h e e d i t o r s 18 • �008 • developmental observer c u r r e n t d e v e l o p m e n ta l r e s e a r c h continued from page 14 center for excellence in developmental and related disabilities. she is on the faculty for medical, nursing, therapy and other professional students with a goal of teaching family centered perspectives, particularly for children with disabilities and their families. tracy is also a course facilitator for ethics in health professions and is the family centered care consultant at the children’s hospital in denver. as a professional advocate, she is a master of facilitating dialogue between families and hospital systems to improve collaboration and resolve differences. each of these important positions provides opportunities for influencing systems and culture change. her leadership has been instrumental in a shift of the entire hospital’s environment, policies and procedures toward family centered care. tracy’s trademark is her bright smile regardless of personal or professional adversity. recently she was hiking in the colorado mountains and suffered a painful snakebite, which caused her to become quite ill. however, she quickly returned to work, which is her passion, with her ever-present smile and positive attitude. tracy’s experiences with her daughter hayley have shaped the person she is today. although hayley had a number of challenging outcomes from her difficult start in life, tracy always focused on hayley’s triumphs and individual capabilities rather than her disabilities. tracy learned the best of life from hayley and she applies those lessons to her work with individuals with disabilities and their families. due to her unique personal experiences tracy realizes that she has a special “insider” perspective and looks forward to sharing her vast knowledge base with the nfi board. she feels the nfi will provide a broader range of opportunities to help others understand the strengths and challenges of having a baby in an nicu. both vicky and tracy have crossed paths in their professional and sometimes personal lives with dr. joy browne, whose respect for each of them cannot be measured. if you want heart, soul, and a deep knowledge in support of babies and their families, vicky and tracy are the people you want on your side. the nfi board is fortunate to have such dynamic and invested individuals join the effort in encouraging the implementation of developmental and family centered care. their contributions and consultation will assure the ongoing quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. references: 1. kramer ms, aboud f, mironova e, vanillovich i, platt rw, matush l, igumnov s, fombonne e, bogdanovich n, ducruet t, collet jp, chalmers b, hodnett e, davidovsky s, skugarevsky,o, trofimovich o, kozlova l, shapiro s. breastfeeding and child cognitive development:new evidence from a large randomized trial. archives of general psychaitry. 2008; 65 (5): 578-84. 2. baby friendly initiative, http://www.babyfriendly.org accessed june 2008. 3. wechsler abbreviated scales of intelligence (wasi), 1999, harcourt assessment inc http://www.harcourtassessment.com accessed june 2008. 4. vohr br, poindexter bb, dusick am, mckinley lt, wright ll, langer jc, poole wk. beneficial effects of breast milk in the neonatal intensive care unit on the developmental outcome of extremely low birth weight infants at 18 months of age. pediatrics. 2006; 118 (1): e115-123. 5. bayley n, 2001, bayley scales of infant development-ii, the psychological corporation, http://www.harcourtassessment.com accessed june 2008. 6. feldman r, eidelman ai. direct and indirect effects of breast milk on the neurobehavioral and cognitive development of premature infants. developmental psychobiology. 2003; 43 (2): 109-119. 7. lucas a, cole tj. breast milk and neonatal necrotizing enterocolitis. lancet. 1990; 336: 1519-1523. 8. pregnancy risk assessment monitoring system (prams): methodology. available at http://www. cdc.gov/prams/methodology.htm accessed january 2008. 9. colaizy tt, morriss fh. positive effect of nicu admission on breastfeeding of preterm us infants in 2000 to 2003. journal of perinatology. 2008; march: 1-6. 10. warren i, tan gc, dixon p, ghaus k. breast feeding success and early discharge for preterm infants: the result of a dedicated breast feeding programme. journal of neonatal nursing. 2000 6 (2): 43-48. 11. profit j, zupancic ja, mccormick mc, richardson dk, escobar gj, tucker j, tarnowmordi w, parry g. moderately premature infants at kaiser permanenta medical care program in california are discharged home earlier than their peers in massachusetts and the united kingdom. archives of disease in childhood, fetal neonatal edition. 2006; 91: f245-f250. 12. nyqvist kh. early attainment of breastfeeding competence in very preterm infants acta paediatrica. 2008; 97: 776-781. 13. sisk pm, lovelady ca, dillard rg, gruber kj. lactation counseling for mothers of very low birthweight infants: effect on maternal anxiety and infant intake of human milk. pediatrics. 2006; 117 (1): e67-e75. 14. kavanaugh k, meier p, zimmermann b, mead l. the rewards outweigh the efforts: breastfeeding outcomes for mothers of preterm infants. journal of human lactation. 2008; 31 (1): 15-21. s u p p o r t i n g fa m i l i e s continued from page 13 assumptions of caregivers, just as a thoughtful understanding of the synactive theory and its implications is far more important than any single positioning aid or nursery furnishing. nidcap professionals will find any of the references listed immediately to the right, but especially the introductory chapters in cassidy and shaver’s (2008) second edition, are wonderful guides to the vast world of attachment literature. as caregivers grasp and integrate these principles, they will be even more equipped to support relationship and brain development in the most fragile infants and their families. references: 1. als h.toward a synactive theory of development: promise for the assessment and support of infant individuality. infant mental health journal. 1982; 3, 229-243. 2. cassidy j, shaver pr. handbook of attachment, second edition. new york: guilford press; 2008. 3. bowlby j. attachment, second edition. new york: basic books; 1982. 4. karen r. becoming attached: first relationships and how they shape our capacity to love. new york: oxford university press;1998. 5. lieberman a.f, van horn p. psychotherapy with infants and young children: repairing the effects of stress and trauma on early attachment. new york: guilford press; 2008. 6. als h, lawhon g, duffy fh, mcanulty gb, gibes-grossman r, blickman jg. individualized developmental care for the very low-birth-weight preterm infant: medical and neurofunctional effects. journal of the american medical association. 1994; 272, 853-858. 7. als h, duffy fh, mcanulty gb, rivkin mj, vejapeyam s, mulkern rv, warfield sk, huppi ps, butler sc, conneman n, fischer c, eichenwald ec. early experience alters brain function and structure. pediatrics. 2004; 113, 846-857. 8. cozolino k. the neuroscience of human relationships: attachment and the developin social brain. new york: norton; 2006. n i d c a p p r o f i l e continued from page 12 developmental observer • �008 • 1� subscribe today! we invite you to subscribe by going to www.nidcap.org and selecting subscribe on the nfi website. subscription period: 1 year ($15) 2 years ($25) 3 years ($35) table of contentsfamily voices............................................. 1 message from the nfi president ........... 3 nidcap training centers from around the world ................................................ 7 the neuroscience of skin-to-skin contact.................................................... 8 nidcap reflections................................ 10 nidcap profile ........................................ 12 supporting families ................................ 13 current developmental research........ 14 developmental resources .................... 15 letters to the editors .............................. 17 donnisha mccadden has had three pregnancies. the first two led to the birth of three extremely early born infants, who were too young to survive. then one year after the second pregnancy, donnisha and her partner, gary boyd, were expecting another set of twins. their story was gathered from telephone interviews. the pregnancy and the birth donnisha: i found out i was pregnant very early on. i was maybe around four to six weeks pregnant. i got the cervical circlage around three months. my doctor took me out of work. as the babies started to gain weight, lying around all day became strenuous. however, i did it. gary: donnisha was pregnant with twins and we had a test in the hospital where they stuck a needle down in her belly and took some amniotic fluid. gabby was supposed to be the one that had the worst possibility of making it. they were talking about a whole host of things that could have been wrong with her. the baby that was positioned lower in the uterus, her brother gavin, was fine. no issues whatsoever. so we were most concerned about gabby. tenfold. donnisha: when the babies actually started to get heavy is when the premature labor started for me. i went into labor on december 27 th, two days after christmas and the doctors and nurses did everything they could to stop it and it actually stopped. maybe a day or two later, i got transferred to cooper university hospital (in camden, new jersey) and the doctors gave me magnesium (sulfate) to stop my labor and it finally worked. so i stayed in the hospital actually for a week and that was a good thing. i think that, that week, i was happy because i was like okay “i can do this, i can do this, i can do this.” then the circlage started to 2008 vol. 2 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmentalobserver the official newsletter of the nidcap® federation international family voicesdonnisha mccadden & gary boyd “courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.”winston churchill continued on page 2 developmental care in the moment photograph by karin schrage-hoon comforted. developmental observer nidcap federation international board officers, members and staff the official newsletter of the nidcap® federation international president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens. harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@ cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens. harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu tracy price-johnson, ma faculty at ucdhsc and the family centered care consultant at the children’s hospital in colorado email: price-johnson.tracy@ tchden.org roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr karen smith, rnc, med nidcap senior trainer st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: kavandenberg@yahoo.com victoria youcha, edd child development specialist children’s medical associates alexandria, va email: vyoucha@gmail.com david wahl director of development and administration email: nfidirector@nidcap.org nidcap federation international (nfi) www.nidcap.org by order of establishment n i d c a p t r a i n i n g c e n t e r s become a member of the nfi the nfi has expanded opportunities for membership to certified nidcap professionals, nidcap trainees, and families of premature infants. please join us! for more information and the online application form, visit our website at: www.nidcap.org. national nidcap training center brigham and women’s hospital and children’s hospital boston boston, massachusetts usa contact: sandra m. kosta, ba email: sandra.kosta@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center, oklahoma city, oklahoma usa co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu carolina nidcap training center wakemed raleigh, north carolina usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu or jhelm@wakemed.org colorado nidcap center university of colorado, department of pediatrics at the children’s hospital denver, colorado usa director and contact: joy v. browne, phd, cns email: browne.joy@tchden.org west coast nidcap and apib training center san francisco, california usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu st. luke’s nidcap center st. luke’s regional medical center boise, idaho usa contact: karen m. smith, rnc, bsn, med email: smithka@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu scandinavian nidcap center, lund and stockholm, sweden astrid lindgren children’s hospital, stockholm; children’s hospital, lund university hospital, lund and department of pediatrics, borås hospital contact: ann-sofie gustafsson, rn, bsn email: nidcap@karolinska.se french nidcap center, brest, france medical school, université de bretagne occidentale and university hospital brest, france co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center, rotterdam, the netherlands erasmus mc-sophia, children’s hospital rotterdam, the netherlands co-director and contact: monique oude reimer, rn email: nidcap@eramusmc.nl centro latinoamericano nidcap fundación dr. miguel margulies buenos aires, argentina director and contact: maria costanza margulies email: conicerullo@gmail.com or basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s nhs trust london, england director and contact: inga warren, dip, cot, msc email: inga.warren@imperial.nhs.uk university of illinois medical center at chicago (uimcc) nidcap training center women’s and children’s nursing services university of illinois medical center at chicago chicago, illinois usa contact: jean powlesland, rn, ms email: jpowlesl@uic.edu the nidcap training center at connecticut children’s medical center connecticut children’s medical center hartford, connecticut usa co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio usa contact: tammy casper, msn, rn email: tammy.casper@cchmc.org the brussels nidcap training center, belgium department of neonatology saint-pierre university hospital free university of brussels brussels, belgium contact: delphine druart, rn email: ddruart@hotmail.com the “power of one” is above all things the power to believe in yourself, often well beyond any latent ability you may have previously demonstrated. it means thinking well beyond the powers of normal concentration and then daring your courage to follow your thoughts. –courtenay, 1996, p.360* each year at the international gravens conference a special tribute is made to an individual or group who has contributed substantially to make the physical and caregiving environments in newborn intensive care units a reality. the 21st annual gravens conference on the physical and developmental environment of the highrisk infant, nicus in motion: the kinetics of babies, families, caregivers and design was held in clearwater beach, florida. at this conference, dr. heidelise als was awarded the stan and mavis graven award on february 1, 2008 for leadership in enhancing physical and developmental environments for high risk infants. the graven award was established in 2006 in honor of stan and mavis graven, who laid the foundation for integrated, scientifically sound and family centered environmental design and caregiving practices in newborn intensive care units. dr. als’ work in individualized developmental care, which has influenced caregiving practices worldwide made her the obvious recipient of this prestigious award. dr. als’ work was celebrated during a reception, dinner and tribute acknowledging “the power of one” as a theme that has distinguished her career. as an individual, no one has influenced the way infants and families are cared for in newborn intensive care units more than dr. als. her work, including the establishment of excellence in training, provision of a strong evidence base for clinical practice, and the organization of the nidcap federation international has created a gold standard for practice, research and systems building. as such, her work has become the internationally 2008 vol. 2 no. 1 “wise (individuals) must remember that while (they are) descendant(s) of the past, (they are) parent(s) of the future.” herbert spencer (1820-1903) nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. table of contents nfi president receives international award of recognition ............................... 1 a message from the nfi director of development and administration ........... 3 the advanced practicum ........................ 4 nidcap training centers from around the world .................................................... 9 understanding developmentally supportive feeding with the premature infant ...... 10 family voices ........................................... 12 nidcap profile ........................................ 14 supporting families ................................ 15 current developmental research ........ 16 developmental resources .................... 17 ® developmental observer the official newsletter of nidcap® federation international nfi president receives international award of recognition heidelise als holds the gravens conference plaque honoring her lifetime of professional contributions to developmental care. she is joined by (from left) joy browne, mavis and stan graven, and bob white. � • �008 • developmental observer acknowledged best practice for the sensitive, individualized, and evidence-based practice of neonatology. her contributions exemplify the notion of the power of one individual to change the way we view and care for infants and families. dr. als provided the attendees at the celebration with a stirring retrospective of her life and her professional career, and proposed her vision for where individualized developmental care might go in the future. these reflections and insights held the audience spellbound, as her history is woven into the fabric of our progress in understanding early human development, the necessity of the caregiving relationship for brain organization and later child and family outcomes. dr. als received a plaque of a swaddled baby and was congratulated by drs. bob white and joy browne, co-chairs of the gravens meeting, dr. and mrs. graven, and several members of the nidcap federation international who attended the meeting. —joy browne, phd, rn *courtenay, b. the power of one. new york: random house publishing group. 2008 a semi-annual publication of nidcap federation international © 2008. articles from developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org senior editor rodd hedlund, med associate editors deborah buehler, phd gretchen lawhon, rn, phd text editor sandra kosta, ba printed on recycled paper nidcap federation international (nfi) contributions we would like to thank all of our individual donors and the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor gretchen lawhon, rn, phd associate editor sandra kosta, ba text editor developmental observer photograph by karin schrage-hoon a mother and her infant, relaxing together in the newborn intensive care nursery. developmental care in the moment ® developmental observer • �008 • � david m. wahl joins nidcap federation international with over thirty years of experience in fundraising, planning, and management. he has served as senior executive of and consultant to educational institutions and non-profit organizations. he has worked with such institutions and organizations as carnegie mellon university, westminster college, bryant university, salve regina university, aaa and a host of new and established educational, non-profit and social service organizations. david performed his undergraduate work at the university of pittsburgh and has completed graduate work in management and education, most recently at the currie school of the university of virginia where he expects to soon complete his med. born in western pennsylvania, he currently resides in rhode island. david is married to gail, a new england native. they have three children: jonathan, 12; elizabeth, 10; and anna, 8. as the new director of development and administration for nidcap federation international, i have been asked to introduce myself to the nfi family. i come to my task with respect for the ideas developed in preceding years by individuals with great minds and good hearts. i have developed early on a sense of the importance of the ideas, as well as a genuine enthusiasm to be an integral part of the quest to make a difference in the lives of newborn infants and their families. it is an exciting time to assume the administrative leadership of nfi. there are challenges, certainly, as there often are with a relatively young non-profit organization. organizations start from the ideas, energy and commitment of a few, then grow and evolve to include new people, new programs, changing roles for all involved, an increased need for resources, and the necessity of administrative structures and procedures to help support and orchestrate all components. the board and martha hopewell as executive director did marvelous work over the past couple of years developing strong frameworks in administration, finance, communications and membership. initial funding sources were developed to support program initiatives and administrative activities, to stride into the future in pursuit of our vision while addressing the practical needs of the organization. we can build on these efforts with confidence. this is the time for nfi to continue to move forward to the next level of its maturation and development. the board of directors has thoughtfully assessed the needs of the organization at this point in time, and redefined my position to put increased emphasis on developing the resources necessary to ensure the implementation and optimization of the aspirations of nfi. the board has also called out the importance of continuing to grow our membership, further enhancing our visibility, and, supporting the efforts of the volunteer board. one of my primary areas of focus, therefore, will be on solidifying current funding streams and expanding and diversifying additional sources of support. this is important both to sustain current initiatives and to be positioned to undertake new initiatives as needs and opportunities arise. another area of focus for my activities will be on membership development. a well-defined and healthy membership base is important to nfi, its organizational integrity and ongoing viability. it will enable us to further disseminate our vision for care of newborn infants in intensive care and special nurseries, provide increased visibility in new areas throughout the world, and provide unrestricted revenues necessary to cover nfi’s general operating costs. our initiatives in developing resources and membership can be supported through increased visibility and understanding of nfi. thus, another important area of attention for me will be enhancing and supporting our outreach activities. we will continuously seek ways to extend the reach of our message. i am impressed on a professional level, and moved on a personal level, by what i have learned over the past couple of months about the work of nfi. most particularly, i am struck by its organizational culture, a culture that includes justifiable pride in a job well done so far, coupled with a desire to do even more. nowhere is this more evident than in the burgeoning initiative with the nidcap nursery certification program (nncp) that is now in its pilot phase. completion of the pilot phase, announcement of the nncp, dissemination of information, and preparation and training for future nncp applicants is scheduled for 2009. it is exciting to imagine the potential offered by the nidcap nursery certification program for systemic change by further integrating the nidcap approach in our health care system. i am pleased and proud to be part of nfi’s vision for the future. —david m. wahl a message from the nfi director of development and administration n f i t r a i n i n g d e v e l o p m e n t s beginnings susann hill-mangan, ma, lpc, was a nidcap trainer for the sahuaro nidcap training center, tucson, arizona between 1986 and 1999. she currently lives in yuma, arizona and has recently begun her own private practice as a licensed professional counselor, “transitions, llc”. as susann reflects “although i am no longer in a situation to be a nidcap trainer, i continue to use my knowledge and experience gleaned from heidi, elsa, gretchen and others in my private practice working with infants and children involved with child protective services (foster care) and adolescents involved with the courts and juvenile probation (some of whom are pregnant or recent mothers themselves). what is once learned and embraced can always be utilized to the benefit of others. this is truly ‘a good thing.’” by the late 1980’s, nidcap training was expanding to more hospital nicus across the nation. susan burke, lead administrator for arizona’s department of maternal and child health (mch), embraced the concepts and philosophy of nidcap and became a strong advocate for the implementation of developmental care throughout arizona’s nicus. ms. burke offered a consultant contract to susann hill-mangan, a nidcap trainer at the arizona sahuaro nidcap training center. she sought to bring nurses, therapists and practitioners to nidcap reliability in all level ii and iii hospitals statewide. with these increased training demands, concerns arose with regard to the quality of integration of the family and nicu team members throughout the nidcap training process. susann states “as a nidcap trainer, it became increasingly difficult to assess whether nidcap trainees were supporting the desired level of connectedness with families and nicu team members in the implementation of developmental care.” as susann reflects, “despite frequent bedside sessions and extensive reviews of write-ups, the actual implementation process could not be assured.” susann decided that perhaps one answer to this conundrum was to require the nidcap trainees to develop a journal which would describe their personal experiences as they implemented developmental care with the family and nicu team members. thus the advanced practicum was ‘born’ in 1992. in arizona, two phases of nidcap training were developed. phase i consisted of the nidcap trainee attaining reliability with the nidcap trainer on the development of the write-up, goals and recommendations for the care of the infant and family. phase ii (certification) was determined by completion of the journal or advanced practicum. the specific requirements of the advanced practicum included four components. first, each trainee was to engage a family of a premature infant (< 28 weeks) to participate in weekly nidcap observations and provide feedback for the individualized care plan. second, nidcap observations/write-ups, care plans were kept in a “scrapbook” along with pictures of interventions (sibling art work, family decorations, personalized blankets, mementos, etc.). third, and as susann states “probably the most challenging for many of the nidcap trainees,” was that the final nidcap was to be completed in the family home as a transitional care plan to be used by the community early intervention professionals. fourth, the trainee’s journal writings and evaluation questionnaires (completed by the family and participating nicu staff ) were then added to the scrapbook and given to the nidcap trainer for review. the advanced practicum was found to be extremely valuable in discerning whether the nidcap trainee was able to synthesize the knowledge of the rigors of reliability into practical application. it was adopted and wholeheartedly supported by elsa sell, md, neonatologist, university of arizona college of medicine, and nidcap director and trainer of the sahuaro nidcap training center, tucson, arizona. as the advanced practicum became a standard for training at the sahuaro chapter, it was then adopted by all nidcap training centers at the seventh annual nidcap trainers meeting in 1996. present jennifer hofherr, otr/l, is a nidcap trainer for the university of illinois medical center at chicago nidcap training center. she writes “after spending 15 years as an occupational therapy practitioner working in the nicu, i made the leap to work directly in the nicu as an employee of the nursing department. working in this capacity, over the last five years, has been a wonderful opportunity to bring my skills and the advanced practicum to understand the evolution, implementation and value of the advanced practicum, we have invited three nidcap trainers’ contributions: susann hill-mangan to describe its beginnings; jennifer hofherr to examine its present use; and jean powlesland to reflect on the experience of its implementation. it is our hope that this comprehensive look at the advanced practicum experience will serve to inform, clarify, and inspire. we invite you to share your own observations and comments by writing to the editors at developmentalobserver@nidcap.org. � • �008 • developmental observer this “baby book”, represents rodd hedlund’s advanced practicum (ap) with 20 weeks of documentation of the first weeks and months of jonathan’s life with his family in the nicu to his home. this journal served to strengthen his understanding of premature infant behavior and strivings, family’s experiences, and nursery staff ’s collaborations. inside, are the nidcap reports, photographs, growth charts and evaluations that rodd has written, collected, and compiled. perspective to the nicu in ways that are better integrated and understood. sharing these insights and strategies effectively with the therapy community is an important goal for me as a therapist and nidcap trainer.” the advanced practicum, or “ap” as it is commonly referred to by nidcap trainees, provides an opportunity for nidcap trainees to operationalize their knowledge of the infant’s behavior and subsystem integration in order to create an experience in the hospital that supports the infant’s strivings for development, the family’s and infant’s essential need for each other, and facilitates the transition from hospital to home. while the requirements and mentorship process are now formalized, the spirit of the ap remains as originally conceptualized by the sahuaro nidcap group. when the nidcap trainer is assured of the trainee’s skill in seeing and translating the story of the infant’s experience in the nicu (through the review of written reports of independent observations and of an observation done side by side with the trainer), the trainee is ready to embark on the ap. the goals for the growth and learning of the professional through the ap include the following: • learn to support a team that is collaboratively engaged in caring for the infant’s parents to feel and be competent in the parenting of their infant and in supporting their infant’s development. • learn what makes nidcap implementation go smoothly, as well as ways to navigate the barriers for implementation, in a particular setting and/or with particular professionals. in working toward and achieving these goals you learn about yourself as a professional and your strengths and needs to effectively implement developmental care. this can be addressed through the conscious use of the reflective process addressed through the trainee’s journal writing. in addition, these goals offer opportunities for continued learning about the infant and family across time as the infant continues to grow and develop and becomes settled into his home environment after discharge. the steps required for the implementation of the ap are: identification of the infant; meet the family; perform the first nidcap observation; meet with the family and staff; continue weekly or biweekly nidcap observations; provide the information from the reports to family and staff and identify processes to support the infant and family throughout the experience; create a binder or book as a family resource (including nidcap reports, family and staff journal, photographs, growth charts, etc.); and perform a final observation done in the family’s home after discharge. the trainee learns that through self-reflection and by reflecting with others, the successful ap is one which represents an effort by the trainee to hold for the team the ideals of nurturance, respect and empathy for the infant, the family and professional staff. the ap is a foray into the vastly complex life stories that the trainee will share with future infants and families. reflections jean powlesland, rn, ms, is a nidcap trainer at the university of illinois medical center in chicago. as a staff nurse, she enjoyed the relative calm and quiet on the night shift for 10 years until she realized that most of the babies had fewer difficulties staying alert through the night than she did! for the last eight years, she has been a part-time developmental specialist in the nicu, working toward becoming a nidcap trainer, which she accomplished two years ago. “nidcap training has taught me not only to interpret the meaning of the baby’s behavior, but to consider carefully the behavior of the adults involved, and how i can use that information to help facilitate an environment conducive to the baby’s and family’s growth.” developmental observer • �008 • � rodd’s ap began in the nicu, five days after jonathan’s birth. rodd noted in his journaling “jonathan appeared to be quite sensitive to the sounds and activites within his area of the nursery and to the caregiving that he receives.” the entry went on to describe how jonathan showed these sensitivities, his efforts to steady himself, and his apparent behavioral goals (including “maintaining his arms and legs tucked up close to his body to soothe and comfort himself ”). rodd continued to observe jonathan throughout his hospitalization, on a weekly basis, and regularly met with his family and caregiving team. change is never easy. in the fast paced world of the complex medical, technological, multifaceted environment of the nicu, the process of change presents many challenges. providing relationship based developmentally supportive care in the nicu is, of necessity, an evolving process. –hedlund, 2001* this evolution occurs through the dynamic interchange between people: infant with family, infant with staff, staff with family, staff with staff, and the infant experiencing the human designed environment. as what we learn in nidcap enables us to see the infant’s behavior in a different light, our values shift and we desire to provide care differently. this desire then leads us to problem solve the logistics of how this might look, and what barriers (policies, time, resources) may be in the way. the role of the developmental specialist, and of the ap trainee for whom this is an “internship” role, is to hold this vision of care, help problem solve these logistics, and determine ways around the barriers. this requires us to help others see what we are seeing, to learn what they value about the current practice and how to help them value the desired practice. during this process, conflict or unease may develop, as there is a growing consciousness that the care we should give is not the care that we actually provide. this is where the reflective process and a reflective process consultant are invaluable as a way to open ourselves to the possibilities of change. a reflective journal is a mandatory part of the ap, as communication of the thoughts and feelings that working through change may engender. the ap provides the nidcap trainee with a chance to “put it all together.” it serves to integrate their knowledge of the infant gained through observation into components that will change the infant’s and family’s nicu experience with reports and guidance at the bedside that help caregivers see what the infant is communicating, as well as identifying where the system is both helping and hindering this process. much of the learning process takes place apart from the formal observations, and for this reason, the reflective journal is the most important component of the ap. here, as the trainees think and write about what they are learning and struggling with, certain themes arise; themes that illuminate the particular strengths and challenges of the system and of the individuals participating in the process. the following are contributions from a number of trainees who have completed the ap over the years, revealing some of the challenges and insights that they have gained. these range from the challenge and disadvantage of being the first in a still evolving process, to taking advantage of moments when people are open to changing practice, to how new learning changes our perspective on our own and our co-worker’s caregiving practice, to trying to negotiate and balance the requirements with the spirit of the work. jacqueline m. mcgrath, phd, rn, nnp, fnap, faan, associate professor virginia commonwealth university school of nursing, was one of the very first trainees to do the advanced practicum; in 1992 she worked with an infant born at 27 weeks after conception who developed lung disease (bpd) and was discharged 12 weeks later. her reflections follow: in 1992, i was a nidcap trainee in arizona. it was during the course of my training that the experience of the advanced practicum was introduced. the ap provided an opportunity to gain insight into the relationship that was developing between the infant, family and newly trained developmental professional. this additional experience also provided the new professional with an opportunity to have continued support and feedback while a long term relationship was developing with an infant and his/her family in the nicu. however, it clearly lengthened the � • �008 • developmental observer though he completed the ap experience, rodd has stayed in touch with jonathan and his family continuing to appreciate the resilience of individuals and power of relationships within families. jonathan’s progress was formally followed to 3 1/2 months corrected age in his home. at that time, rodd noted that jonathan “appears to be most interested in his environment and the people within it.” process. although i valued the overall process i am not sure it was necessary. don’t gasp, i did appreciate the learning during the ap yet, i did not appreciate the additional step in the process that i had not previously agreed to, or the fact that the steps, guidelines or process were evolving during my training experience. i do realize that being the first trainee to have this experience had its distinct problems. i know these issues are clearer today and i am sure trainees do feel supported, encouraged and their commitment to this process is acknowledged by all involved. i believe praise and encouragement during the training process are important to the success of the nidcap trainee. taking on this challenge is not for the faint of heart and these professionals really do want to make a difference in the lives of the infants they care for. i commend each of them for their commitment to excellence. jean powlesland, rn, ms, nidcap trainer at university of illinois, did her practicum in 2001 following frances, born at 25 weeks after conception who was chronically vent dependent and was transferred to another institution for six weeks of her six month hospitalization. jean writes: the ap really began to click for me when frances returned from the other hospital. i felt my way as i began to define my role as developmental specialist as different from the therapists and nurses. frances had a lot of behavioral challenges to work through and she suffered from severe withdrawal due to chronic narcotic use. in the early days of her life, the nursing staff appeared disinterested in my input; she was “just another 25 week preterm baby,” and trying to convey why her nursing care should be “different” from the others, fell on deaf ears. but things were different now; the staff very much wanted my help with this very challenging baby. they now took the time to read the nidcap reports, because they were eager for any resource that would help them to help her. more than once i have seen how important it is to take advantage of a situation where the information is greatly needed (i.e., if staff feel that they are getting by just fine with their current knowledge or experience, there is no incentive to change or to experiment with something novel). making the home visit to see frances and her family was inspiring. many staff had concerns about frances’ parents and whether they would quickly be overwhelmed by her needs and care. our therapists felt that the mother was often distracted when they tried to teach her therapeutic techniques to use at home, and these techniques were going to be critical to help frances become calm and relaxed. but frances looked good as she sat in her mother’s lap in her home. she was relaxed, breathing easily, much more so than when last in the hospital. her parents said that at times she stayed awake and playful and they seemed realistic about the challenges of caring for her (e.g., not overly negative or optimistic). they had been aware that some of the unit staff doubted their ability to care for frances and i was afraid that they would feel compelled to “prove” themselves to us during this visit, but instead i found them open and relaxed. i wish that the staff nurses could see how being in their own home environment has made such a positive difference. it was a rewarding closure to this long journey, and i felt that now i was beginning to have a clearer vision of what this role is all about. pam kloska, pt, cimi, a physical therapist at university of illinois medical center, completed her practicum in 2005. she worked with angie, a twin girl born at 29 weeks after conception. pam describes her experience: by getting to know angie and her family the entire ap process felt more special and meaningful. as i wrote the developmental observer • �008 • � reports, i could actually visualize the parents reading them. i know that the reports about angie were written for the staff as well, but the fact that the parents were reading them took the importance of the observations and write-ups to another level for me. during the practice time prior to my nidcap workday, i would only meet an infant once through an initial observation followed by a write up. these one time encounters were challenging for me because i could not see any effect over time of the nidcap process. however, with the ap, i got to know angie over a period of multiple observations as well as through her parents’ eyes; i felt more connected to her emotionally. this allowed me to go further in being able to understand her cues, what she was working toward in terms of goals, and what angie needed in terms of people supporting her. the interesting thing was that before i even started nidcap training, i thought i was already doing this, but i realized through participating in nidcap, that i really was not. now when i do something like change a diaper, i see care as an opportunity for learning about each infant and specifically how i can provide developmental support and nurturance. jeanine klaus, ibclc, a lactation consultant, accomplished her ap in 2007, working with michael born at 29 weeks after conception. jeanine reflects: it is a rare opportunity to get to know one family so well as you share their journey with their newborn from birth, through the intensive care unit stay, and finally to their own home. i cannot think of another way to grasp the magnitude of the “job” of providing individualized developmental care to one baby and family, given the myriad of hospital staff, the many family members and the multi-layered knowledge and expectations each brings to the infant’s bedside. this form of focused, in-depth practice emphasized for me the importance of deciphering each care provider’s personal appreciation for individualized developmental care in order to be able to translate the baby’s behavior for them in a meaningful way. from past experience i know that every family poses unique features that are accommodated in your relationship with them. in my ap, the mother was reserved and quiet, not always comfortable or fluid in articulating her feelings and concerns; she presented most of her worries in very concrete terms (e.g., michael being able to do the things that other children do). it became important to point out michael’s competencies, especially those that might be easily overlooked when compared to a full term infant. i made sure to take time to just be with michael and his mother without an agenda; to sit with the mother at her eye level; to be always first interested in her wellbeing; and to solicit her understanding of michael’s behavior and her plan for parenting. in retrospect, i wondered if i had been more directive, explicit and didactic, whether the mother might have had less trouble breastfeeding and might have enjoyed more regular skinto-skin care. but then i might also have lost opportunities to highlight how consistently and enthusiastically michael responded to her and their relationship might have been fraught with “should do’s” rather than filled with their mutual enjoyment of just relaxing with each other. though i never felt like i smoothly integrated all the parts of individualized care, i do see that i have come a far distance from where i started a year ago. i continue to work hard to pull the details of an observation together into a narrative whole, frequently getting lost in the minutiae of the scan sheets. i am just beginning to feel confident about how much more i can ask of the staff on behalf of the infant. i seek to validate what the caregiver sees consistent with developmentally supported care and to help scaffold their thinking to a different plane. as a result of this ap experience: i see what might be supportive at the infant’s bedside; i have a keener sense of how to draw the parents into the care of their newborn baby; and i now have a vision of what developmental care of an infant should strive for at each point along the continuum, from birth to going home with their family. perhaps angela balensiefen, rn, bsn, a staff nurse at children’s hospital of wisconsin, fox valley, who completed her advanced practicum this year, said it most succinctly: in the end…this has been quite a process. i have learned a lot!! most of all, i have learned that the focus and primary purpose of developmental care is to foster the parent-infant relationship to the best of your ability. when i started this practicum, i was very keyed into the “write-ups,” very nervous about working with the staff, and how to do so, while at the same time providing jose with developmentally appropriate hands-on care. now that i am finished, i realize that the write-ups were important for everyone’s viewing and supported consistency in jose’s care. however, what seemed more important, and had a greater impact, were the few times i worked directly with his mother when she was caring for her son. my phone discussions with her during his stay and after were also crucial, i felt, in having her feel she had a consistent support person during this stressful time in her life. so, in the end, i would have done things differently. perhaps by focusing more on the family, the staff could better appreciate jose and his mother’s experiences in the nursery; and jose’s mother could better ensure that her son received the care he deserved. reference: * hedlund,r. the process of change. unpublished presentation. oklahoma infant transition program, oklahoma children’s hospital, university of oklahoma health sciences center, oklahoma city, oklahoma. 2001. 8 • �008 • developmental observer we began at cincinnati children’s hospital medical center (cchmc) as staff nurses working in the regional center for newborn intensive care (rcnic) in downtown cincinnati, ohio. our unit is a 59 bed level iii c neonatal intensive care unit that provides services to infants and families transported from the surrounding area and from afar. this past year we had 724 admissions with an average length of stay of 23 days. about 33% of infants admitted into the rcnic are <2500 grams and 46.3% are born before 37 weeks gestational age. therefore, the majority of infants in our nursery are born around term with genetic, surgical, and/or complicated airway concerns. we opened the fetal care center in 2005 for these infants requiring specialized services. our interdisciplinary team includes a neonatologist, a neonatology fellow, medical residents, and advanced practice nurses along with our interdisciplinary bedside team. this distinctive population demands all members of the care team to have a wide set of skills at the bedside that support the direct care environment of the infants and families receiving our care. in 2001, four years into our developmental care journey, many of the ingredients that make our nursery special began to come together. our strong nursing leadership designed an individualized, developmentally supportive nursery environment. a stronger, unit-wide developmental care team emerged with three more staff (two registered nurses and one respiratory therapist) who accomplished nidcap reliability. and our team hired pattie bondurant, mn, rn, cns as the senior clinical director. she has been instrumental in empowering us to share our learned wealth of knowledge with the rest of our staff, our surrounding region and at statewide conferences. with all of this support and guidance, we committed to becoming a nidcap training center. as the two of us independently worked to meet the necessary components of becoming nidcap trainers, we developed ourselves and our professional roles. for tammy, this meant further academic achievements through a graduate program that focused on adult education principles to identify strategies to help parents and instruct professionals in this work. for linda, this meant enrolling in graduate nursing classes to support her organization of the many training components and educational offerings for staff and the surrounding community. we worked together on the development of a nidcap budget and strategic plan to assist us in establishing our center. having met all of the nidcap training center development and trainer requirements, we proudly opened our nidcap training and research center in 2007. since then our focus has been on training staff within our unit. at this time, we have three registered nurses, one occupational therapist and one speech pathologist as nidcap reliable staff. there are an additional five staff at various levels of nidcap training. we provide nidcap training for staff on a quarterly basis and plan to reevaluate this process at the end of this year. we provide nidcap observations monthly, with informal follow-up in between, for infants born at or less than 34 weeks gestation. the billing structure for these nidcap observations allows us to sustain and grow our nidcap program. our goal is to increase the frequency of nidcap observations to every other week for those identified infants as the number of nidcap reliable staff increases. in addition to training and increasing our capacity to provide nidcap observations, we are focusing on the assessment and planned interventions for infants who have difficulty with state organization. these infants have often endured multiple surgical procedures, long-term respiratory support, delayed enteral nutrition and chronic pain. this concentrated effort has led to the creation of what we have termed a “comfort bundle,” with interventions this is a story of the birth of our nidcap center. in 1997, the maternal child nursing division of the ohio department of health funded introductory nidcap training for every nicu and scn in the state. we were among the fewer than 5% of individuals who completed training to reliability. our trainer, dr. gretchen lawhon, provided us with supportive guidance, establishing what is becoming a lifelong friendship as we moved from expert bedside nurses to novice nidcap students and eventually to nidcap trainers. we continue to be humbled as we look back to write our story for the developmental observer, acknowledging our accomplishments while realizing our challenges in becoming a nidcap training center. continued on page 18 tammy casper and linda lacina developmental observer • �008 • � n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d tammy casper, msn, rn and linda lacina, rn 10 • �008 • developmental observer understanding developmentally supportive feeding with the premature infant erin sundseth ross, phd, ccc-slp erin sundseth ross, phd, cccslp received her ma in speech and language pathology in 1988 from california state university, stanislaus, california, and her phd in clinical sciences, health services research in 2007 from the university of colorado health sciences center in denver, colorado. she holds a certificate of clinical competence from the american speech/language/ hearing association. she has worked for 15 years in nicu settings and in pediatrics, with a specialty in feeding disturbances. dr. ross has supported dr. joy browne during nidcap trainings in the united states and internationally. currently she is completing a post-doctoral fellowship in nutrition, with a research focus on factors influencing growth and feeding in the nicu and post-discharge. she speaks internationally on the subject of feeding development and feeding problems in the medically fragile infant and child. dr. ross has been married to alan for 23 years. they have three children, and in december became grandparents. developmentally supportive care attends to both the distal (hospital and nicu room) and proximal (bedding and caregiving) environment, minimizing stress and facilitating the optimal development of the infant and the family. development is seen as a process that is unique to each infant. medical supports are provided for physiological stability, and caregivers identify and respond to approach and avoidance cues to guide actions. often, caregivers see feeding as a task that must either be taught, or that develops because the infant has “practice” with repeated attempts at feeding, rather than within the context of development. physiologic instability is often tolerated during feeding with the thought that it “will eventually get better,” rather than being used as a signal to provide additional supports for, or to diminish demands on, the infant. this simplistic viewpoint lacks an understanding or appreciation of the role of supportive care in facilitating feeding development. the dichotomy between the philosophy of developmentally supportive care and the practice of feeding in many nicu’s may be attributed in part to both the pressure to reduce length of stay and the evolution of therapeutic intervention in the nicu setting. feeding is typically the last milestone achieved prior to discharge from the nicu. in 2001, eichenwald and colleagues1 studied 15 nicu’s and found that infants who were discharged with a later post-conceptual age were reported to have later maturation in feeding behavior. hospitals that used pulse oximetry for a longer duration reported later maturation of feeding behavior. the study concluded that there was a large variation in discharge results “in part from differences in monitoring for and documentation of apnea of prematurity and feeding behavior” (p 928). some nicu cultures assume apneic episodes with feeding will be outgrown, and therefore saturation monitoring during feeding is not necessary. instead, caregiving is used to determine the ability of the premature infant to feed. however, thoyre, et al.2 found that preterm infants averaged 10.8 desaturation events per feeding when videotaped close to discharge, with severe (spo(2) ≤ 80) desaturation episodes observed in 21% of the feedings, and moderate (spo(2) 81 to 84%) desaturation episodes in an additional 20% of feedings. when thoyre and carlson3 sought to determine the behaviors that were associated with apnea or hypoxia during feeding, few observable behaviors were consistently associated with physiologic instability. the authors determined that attending to changes in breath sounds and the pauses in sucking may assist the feeder, in the absence of pulse oximetry. however, attunement to the infant and recognition of behavioral cues may be lacking without training in developmentally supportive care. in addition to the pressure to decrease length of stay, feeding is often not recognized as a normal developmental process, but rather something to be taught. preterm infants are known to be at risk for increased developmental problems and poor feeding behaviors, and therefore many therapists presume that all preterm infants need to be “habilitated” without appreciating individual developmental paths. both therapists and medical professionals attempt to speed the process of feeding in premature infants. gestational age has continued to be used as a marker for initiating breast and bottle feeding in some nicu’s. others initiate feedings on all infants when they reach a physiological point such as tolerating all enteral feedings. both of these approaches ignore the individuality of the infant, and indeed may be detrimental to the developmental process. infants who are discharged from the nicu are at elevated risk of feeding and growth problems. there are data that indicate feeding problems (such as gagging, vomiting, and developmental observer • �008 • 11 food refusal) are seen in 50 – 75% of the premature infants discharged from the nicu, regardless of medical course of the infant.4,5 the role of learning must be appreciated, as feeding is supported by primitive reflexes only through the first six months of age, then moves into a completely volitional and learned task. practice may be useless at best, and may even be harmful when it overwhelms the fragile balance of stability in the preterm infant. feeding from a developmentally supportive care framework sets the stage for the infant and the family to have experiences that are positive and meaningful. in 2001, dr. joy browne and i developed the baby regulated organization of systems and sucking, which was designed to provide a conceptual framework for caregivers to appreciate and facilitate the development of feeding. this conceptual framework integrates the concepts of supporting systems regulation with known developmental milestones in premature feeding to identify supportive interventions. we encourage staff members to consider the influence of the environment and the caregiver’s decisions on the development of feeding, and to set the stage to support organization in all systems using the philosophy and the skills developed during nidcap training. feeding needs to be an enjoyable, collaborative experience between the infant and the primary caregiver, the parent. infants who are fed by nursery caregivers who lack developmentally supportive care training may be learning that feeding is not enjoyable, but testing this hypothesis presents challenges. data exist that suggest infants may in fact be negatively influenced by early feeding experiences. in an article published by fucile, et al.6 early aggressive oral stimulation was shown to decrease the transition time from start of oral feeding to attainment of full oral feeding. however, the difference in gestational age at full oral feedings was not significant. a later article by fucile et al.7 reported no difference in maturation of feeding skills in infants treated with an oral stimulation program. in both of these articles, the control infants appeared to gain weight better than the experimental group. and yet, therapists and medical staff across the country do not appear to appreciate the possible negative learning with oral stimulation. perhaps the oral stimulation that infants are subjected to is in fact contributing to the abysmal feeding outcomes. dr. barbara medoff-cooper, dr. kathleen philbin and i have been working over the last three years on research designed to examine feeding and growth outcomes for infants who begin nipple feeding at different gestational ages and who are fed by caregivers with differing developmentally supportive care educational backgrounds. additionally, i have been fortunate to have had numerous opportunities to teach professionals across the country to view feeding development within the context of developmentally supportive care. at these workshops and in particular at the rocky mountain fragile infant feeding institute, a multidisciplinary faculty specializing in therapy, nutrition, mental health, continuing education and nursing, train professionals on the intricacies of feeding and development. comprehensive training in the nicu that includes a developmentally supportive feeding philosophy may be the key to improving long-term feeding outcomes. references: 1. eichenwald e, blackwell m, lloyd j, tran t, wilker r, richardson d. inter-neonatal intensive care unit variation in discharge timing: influence of apnea and feeding management. pediatrics. 2001;108(4): 928-33. 2. thoyre s, carlson j. occurrence of oxygen desaturation events during preterm infant bottle feeding near discharge. early human development. 2003; 72(1): 2536. 3. thoyre s, carlson j. preterm infants’ behavioural indicators of oxygen decline during bottle feeding. journal of advanced nursing. 2003; 43(6): 631-41. 4. cerro n, zeunert s, simmer k, daniels l. eating behaviour of children 1.5-3.5 years born preterm: parents’ perceptions. journal of paediatric and child health. 2002; 38(1): 72-8. 5. hawdon j, beauregard n, slattery j, kennedy g. identification of neonates at risk of developing feeding problems in infancy. developmental medicine and child neurology. 2000; 42(4): 235-9. 6. fucile s, gisel e, lau c. oral stimulation accelerates the transition from tube to oral feeding in preterm infants. journal of pediatrics. 2002; 141(2): 230-6. 7. fucile s, gisel e, lau c. effect of an oral stimulation program on sucking skill maturation of preterm infants. developmental medicine and child neurology. 2005; 47(3): 158-62. the newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.com. the assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.com for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. fa m i ly v o i c e s interview by deborah buehler, phd born in 1987, at 28 weeks after conception, amara selvitella weighed one pound and 14 ounces. during amara’s hospitalization, her mother, linda, recounts that her prematurely born daughter had five blood transfusions, retinopathy of prematurity, apnea and hypertonia. also during that time, the selvitella family participated in research, at the brigham and women’s hospital in boston, studying the influence of the nidcap approach in the nursery with very early born infants who had received mechanical ventilation after birth. the us department of education, national institute on disability rehabilitation and research funded this investigation, led by heidelise als, phd. now twenty years later, amara is a college sophomore at florida atlantic university in boca raton and linda is a physical education teacher in the florida public school system. the following excerpts are from telephone interviews where amara and linda each shared remembrances, impressions and suggestions from their experiences and their relationship with one another. what do you remember about the nicu? linda: i visited amara every day, twice a day. i never missed one day. back then, the nicu was very different than i see it is today. we were only allowed to hold our baby once a day. i couldn’t take her out in the afternoon because i wanted her father to also be able to hold her when he came to the nicu in the evening. i was allowed to touch her through the incubator windows. i believe that i had postpartum depression, but i didn’t know it. i took videos of amara every day. at least i was able to watch them when i was home, but it was very hard to leave my daughter. if i could have stayed with her, i would have stayed with her every single night. i would never have left her. i know that my being in the nicu with amara every day definitely had a tremendous impact on my daughter doing as well as she has. can you describe some of your experiences over the years? linda: i was a single parent, and at night i would sit on the bathroom floor and cry and just pray to god that i was i doing the right thing for amara and that i had energy to keep up. i hoped i was giving her what she needed and teaching her the skills she needed in order for her to be independent and happy so she could have a normal life and grow up to enjoy the relationships and experiences that she desires. i brought amara to many different infant and child educational and therapy programs. in some of the programs, the children were normal and walked by themselves. but i had to carry my daughter everywhere because she didn’t walk until 17 months. when she did walk it wasn’t normal and she dragged her right leg so she wasn’t able to get along by herself. some of the other parents were a little abrasive and they would ask me “why can’t your daughter walk and what’s wrong with her?” and i said, “she’s a preemie baby and she’s not able to walk on her own yet so i have to carry her.” i always made sure i was positive and told my daughter “yes this is what is happening right now but you are going to do fine.” she would always smile at me. amara: there are always struggles in life and the people you surround yourself with, they help, it’s sort of a process. you should never try to do something alone because it’s difficult. i think that with the right care, whether that be physical or emotional, and the right guidance everyone can get through whatever they are struggling with. life is a constant struggle and as long as you look toward the positive of things, they tend to go by quicker and more easily. linda: as her mother, i had to really get to know amara and know when to push her and when to let go. i noticed when my daughter was very, very young that she would give up very easily if anything were challenging, except for sports. when she was out on that field, she loved the moving and the activity so much that she would push herself. but she had to love something that much and most things, like school work and chores, she didn’t feel that way about. amara did much better when i was supporting her and there for her so that’s what i did. and from when she was a baby to a teenager she had to have choices and feel like she was the one making decisions. so i gave her choices that i could live with no matter which choice she made. as a throughout amara’s hospital stay, she and her mother linda were together everyday. 1� • �008 • developmental observer child, she really believed she was making the choices. then when she got to be a teenager that is when it got tricky because she figured out what i was doing. i had to give her a lot of space. she was very, very opinionated and she knew exactly what she liked and what she didn’t like and we got into some pretty tough spots there. i always stood my ground, and when i went too far, she would push more and then i would have to negotiate. now that she’s becoming an adult she has a better idea of why i was so tough with her. amara: my mom was a disciplinarian. i was a little bit rebellious growing up especially more towards 15, 16, 17 years of age. i would assume this is normal, but she straightened me out and i always respected her and i think that was what made it easier for our relationship. because i would never do anything that i thought she would disagree with or if i did it would never be bad. i was never into drugs. i would never sneak out. because i knew there would be repercussions and i would never want to face them. do you think amara being born early has shaped the people that you are today? amara: i don’t really give up on things that easily. so i think that has a lot to do with my development-as my mom says, i kind of fought for my life for a while. i had tubes in every direction and it was just difficult to see me like that. i think that she is really proud of who i’ve become. linda: i certainly think that it has made amara a pretty strong person, that’s for sure, because she had a lot of trials and tribulations. she doesn’t remember all of them, but i know that she fought because i was with her. she had to fight to stay alive and to get to where she is today. i loved her from the moment she was born and i always thank god each day that things turned out the way they did. i’ve become stronger and can see the growth in myself as well. when you have a premature baby your whole world gets turned upside down. you doubt everything in your life. you don’t know how you’re going to go on and how you are going to make it. can you describe your relationship with one another? linda: i raised amara to be independent, to know herself and to make decisions for herself and always know that i love her. she has grown into a very wonderful young lady and i’m very proud of her. i just feel that i’m always there for her and that’s very rewarding to me that my daughter wants to talk to me, tells me how she feels, tells me her difficulties, asks me for advice sometimes and shares what she’s going through. the most rewarding things are all the cards she sends me where she shares her feelings of what i mean to her. it reassures me as a parent that i’ve done the right thing even when i think i didn’t do the right thing. amara: growing up i was always close to my mom. she has always done her best to support us and make a life for us. as a single parent, raising a daughter, she always struggles. the house that we live in, my mom did all on her own with her teaching salary. i really respect her a lot for doing those things because it’s so easy to just say i can’t do this and just to raise an okay family. she really did her best to be there for me. when she was at school, i was at school, and she would pick me up and we would go to soccer practice and she’d help with my homework and i got a knack for being responsible and for having a positive outlook on things from her. we had and have a great relationship. now that i am away at school, i’m using what she taught me on a daily basis and she is proud of me. our relationship just tends to get better as i get older because i am given more responsibilities as an adult. what are your hopes for the future? linda: i want my daughter to be excited about whatever it is that makes her excited. it’s about her not me. i’m doing what i love and you’ve got to have passion about what you do because you are going to be doing it a long time. my wish for my daughter is that she finds a job that she has unbelievable passion for, that she finds someone that she can share her life with, and that she creates whatever it is that she wants to create. amara: i plan to study occupational therapy in college and work with premature babies. i look forward to guiding them through their younger years and helping them. i want to try to be there for them when they need me because someone was there for me. i think that has a lot to do with my development, physically and emotionally, and my personality. i look forward to one day raising a family and maybe using a lot of the aspects of my mother to raise my kids. i look forward to living my life, wherever it takes me, because i’m a pretty positive person. i have a pretty good head on my shoulders. twenty years after her birth, amara and her mother describe a closeness and mutual respect for one another. continued on page 18 developmental observer • �008 • 1� 1� • �008 • developmental observer n i d c a p p r o f i l e dorothy vittner, rn, msnc björn westrup, md, phd björn westrup, md, phd, is the director of the scandinavian nidcap center at astrid lindgren children’s and karolinska university hospital, stockholm, sweden and lund university hospital, lund, sweden; as well as the medical director of neonatology at karolinska university hospital, danderyd, sweden. björn first became attracted to the medical field and the hospital setting when he was a parachute trooper in the swedish military working part-time as a medic. he was fascinated with the discipline of pediatrics encompassing the holistic view of the family in context to the child. throughout the years he has maintained a strong interest in philosophy and the social aspect of the family and its impact on health and healing for infants and children. björn first heard dr. heidelise als present the synactive theory of infant behavior at the karolinska university hospital in 1989. he was fascinated by these concepts and developed a quest for knowledge and better understanding of this conceptual framework. björn began his pursuit of individualized developmentally supportive care in a small, community-based non-academic hospital. agneta kleberg, rn, phd, his collaborator of many years, shares one of their first “developmental moments” when they were learning about nidcap: having just returned from boston, after our first nidcap and apib introductory days (november, 1990), björn and i entered the karolinska university hospital nursery in stockholm to find a nurse attempting to help a mother and father bathe their son. the baby was fussing and stretching his arms and legs out away from his body. björn quietly walked over to help the mother and nurse. he gently tucked the baby’s arms and legs up close to his body. the baby became calm and relaxed into the warm comfort of his mother’s arms as he softly looked up into his mother’s face. everyone was amazed. björn and i were very happy that these new developmental supports that we had just learned about from dr. als, also worked here “at home” in sweden. this event was the very first starting point for the implementation of nidcap in sweden. to address some of the challenges of the initial nidcap presentations to the larger academic university hospitals, björn validated the approach through research. he has long been a strong advocate in the medical community, publishing many articles and lecturing on the efficacy of individualized developmentally supportive care. he speaks of the need for perseverance and stamina in implementing individualized developmentally supportive caregiving practices. he identifies the need for more research as he seeks to explain the physiological mechanisms of supporting improved neurodevelopmental outcomes for premature and critically ill infants. björn also recognizes the need for more randomized controlled trials and looks to continue to collaborate with research investigations in the areas of neuroimaging and kangaroo mother care with its influence on infants and their families. björn values the team process and has collaborated and supported many colleagues along his developmental journey. colleague, deborah buehler, phd recalls with a smile: the ease with which björn jumped up during a break in her introductory nidcap lecture in falun, sweden, and readily participated in a physical therapist-led rendition of the “itsy bitsy spider” with the whole audience. the exercise pointed to the importance of adults using movement to support learning. at the time, i was thoroughly impressed with björn’s comfort with himself as a leader in his hospital and gained whole new appreciations of multi-disciplinary system-wide supportiveness and team spirit. björn’s colleagues admire his investment and fortitude in supporting infants and their families. he is seen as valuing the physician’s perspective as well as each member of the team’s contribution to the success of the infant and family’s experience. in addition, björn takes great pride and finds it incredibly rewarding to see the shift in support of developmentally supportive care over the past 10 years, first within the swedish community and then throughout europe’s medical community. he has been actively involved at the international level with the creation of the nfi, including being a member of the board of directors from 2001 to 2007. families from diverse backgrounds often return to the hospital to share updates on the children he has cared for and the impact he has had on their lives. as inga warren, dip cot, msc, a colleague, reflects: continued on page 18 developmental observer • �008 • 1� s u p p o r t i n g fa m i l i e s melissa r. johnson, phd parent journaling: supporting parents in reflection reflective process is an integral part of the nidcap approach to caring for infants and families. finding an avenue for parents to reflect on who this new person in their family is and to express their hopes and dreams as well as anxieties and fears is a valuable adjunct to our clinical care in the newborn intensive care unit. journal writing may be a therapeutic process that helps individuals clarify their thoughts and may be especially useful for those who have difficulty expressing feelings verbally. it is a safe and private way of confronting new challenges and processing both information and emotion. having learned and come to value journal writing in my own work as a nidcap trainer, i incorporated it into my dissertation work facilitating parents in the newborn intensive care unit.1 in a small exploratory study aimed to examine a therapeutic process of an individualized nursing intervention, seventeen parents responded through journal writing to a small set of questions on a weekly basis. the questions such as “how are you feeling as a parent of this baby” were designed to elicit the more elusive feelings and emotions that a parent has both regarding the infant and self. one response by a parent of a then 30 week infant was “it’s getting harder and harder to leave her there night after night. she’s becoming less and less an event that’s been anticipated, and more of an actual person with a face that can stay in my memory, and be loved and missed.” when the journal writing was analyzed with a constant comparative analysis several common themes became clear which demonstrated the parent’s integration of critical appraisal as a measure of parent competence. there was a positive trend in parents expressing their understanding of the infant as well as personal feelings. in writing about how they were able to provide care to their infant all parents wrote of physical aspects of care and fourteen wrote about emotional aspects of care. all parents expressed the issue of personal recognition and were confident that their infant knew who they were and responded to them in a unique way. in response to how the infant had changed in the past week, all parents wrote in both physical and behavioral terms with a majority mentioning the most recent weight of their infant. three of the ten mothers wrote about their infant’s developing personality over time. when offered the opportunity to share additional feelings, there were both positive and negative emotions expressed. many parents expressed frustration in wanting to hold their infants more and in having limitations placed on their handling. more than half of the parents expressed a feeling of pride in their infant. since incorporating the journal writing in my dissertation study with parents, i have found support in the literature for journal writing as a therapeutic avenue to reduce stress in nicu parents. macnab2 demonstrated that 73% of the 23 mothers, who did journal writing while their infant was in the nicu, reported that it reduced their stress. in another study, barry and singer 3 randomized 38 mothers of preterm infants, who were measured for psychological stress, into two groups. one of the groups was asked to journal about their most emotional and upsetting experiences in the nicu over four consecutive days. this intervention group, using journal writing, showed a significant decrease in symptoms of depression and post traumatic stress in comparison to the non-journaling control group. currently one of the most common ways that journal writing is incorporated in the newborn intensive care unit is with parent scrapbooking. the creation of scrapbooks combining photographs and journal writing often becomes a source of informal parent support in the nicu in addition to a method of clarifying the infant’s birth and place within the family. regardless of whether parents express their integration of this new family member through photographs and/or brief journal entries, the creation of tangible evidence in a memory or scrapbook clearly represents reflection. therefore this informal yet therapeutic vehicle for families in the newborn intensive care unit may be powerfully effective in facilitating parents’ understanding of their son or daughter. references: 1. lawhon g. facilitation of parenting in the newborn intensive care unit. unpublished doctoral dissertation, university of washington; seattle. 1994. 2. macnab aj, beckett ly, park cc, sheckter l. journal writing as a social support strategy for parents of premature infants: a pilot study. patient education and counseling. 1998; 33:149-159. 3. barry lm, singer ghs. reducing maternal psychological distress after the nicu experience through journal writing. journal of early intervention. 2002; 24 (4):287-297. family support is a primary goal of care guided by nidcap principles, and nidcap professionals use a variety of approaches to individualize their support of families. in her research and clinical practice, gretchen lawhon, rn, phd, nidcap master trainer and director, mid-atlantic nidcap center, shares some of her observations and research findings on a particularly valuable approach to helping families. supporting families to find opportunities to reflect on and create memories of their nicu experience through written or pictorial journaling is the focus of this column. 1� • �008 • developmental observer inga warren, dip cot, msc c u r r e n t d e v e l o p m e n ta l r e s e a r c h the physical and sensory environment of the nicu the developmental impact of the physical environment attracts a lot of interest, not least from the vermont oxford network (von), which formed a physical environment exploratory group in 2005 nicknamed “senses and sensibilities.” this group, drawn from five centers (none of which have experienced nidcap) has published 16 evidence based recommendations for “potentially better practices” (pbps) that support newborn brain development (liu et al.1), and create “a nicu environment that optimizes the neurodevelopment of the infant while supporting the well being of family and staff ” (graven2). this work was also the subject of the most recent von quality improvement internet seminar (inicq) on november 14, 2007. the report in the journal of perinatology begins with an overview of the processes of neurosensory development that underpin ensuing arguments for an environment that “protects and supports the developing newborn brain through gentler care practices and strategies that preserve sleep.” the clinical literature on tactile, chemosensory, auditory and visual systems and sleep were reviewed with pbps. these were based on best available evidence using a five point classification system for evaluating strength and quality of evidence adapted from gray-muir3 in which one is the strongest and five the weakest level of evidence. animal studies were included at level five. the pbps related to chemosensory and acoustic development presented at the november 2007 von inicq were based on evidence that rated level three on the evaluation scale. recommended practices are bundled into age groupings, thus there are 11 pbps suitable for implementation from 23 weeks gestation to term, and five for implementation at 31-32 weeks to term and beyond in some cases. the multimodel nature of sensory stimulation is recognized and the recommendations do not exclude concurrent implementation. some of the recommendations are quite general, for example strategies that preserve sleep are recommended for all nicu admissions, without specifying which strategies. while it is helpful to have such common sense reinforced with scientific evidence some of the other recommendations are worryingly prescriptive, particularly those that involve physical contact between infant and caregiver. the recommendation for daily massage “as tolerated” will set alarm bells ringing, especially as the implication appears to be that this will be implemented by nurses and therapists until the infant shows signs of physiological instability. in the first place, there would surely be merit in regarding this kind of touch therapy as the province of parents, and secondly the concept of tolerance is likely to be subjective, depending on the subtlety of the caregiver’s observations skills. in the concluding discussion, the authors make special reference to nidcap, in the context of stress reduction and self regulation, pointing out that “the potential benefit of diminishing stress during critical periods of development may reflect multiple strategies with overlapping beneficial pathways.” stanley graven brings the whole topic back into the territory of family centered care when he states, at the end of his address through the vermont oxford november internet seminar, “bring the family back to the nicu and the mother closer to her baby! family involvement will promote and facilitate all the pbps.” the von project is closely linked to the physical and developmental environment of the high risk infant project which publishes its most recent update from the multidisciplinary consensus committee, chaired by robert white4, in the same supplement to the journal of perinatology. some new ground is covered, including updated recommendations for single rooms, which are gaining popularity as a desirable option in the nicu. although single rooms have many advantages, such as reduced infection and less environmental stress (walsh et al.5), there are issues about managing care based on the infant’s behavioral cues. even with one to one nursing it is likely that the infant will be alone some of the time and that electronic monitoring will take the place of direct observation. it would be interesting to share ideas and thoughts about this in the context of implementing nidcap. let us know what you think by writing to the editors at developmentalobserver@ nidcap.org. references: 1. liu wf, lauder s, perkins b, macmillan-york, e, martin s, graven s. the development of potentially better practices to support the neurodevelopment of infants in the nicu. journal of perinatology. 2007; 27: s48-74. 2. graven, s. vermont oxford network inicq seminar. 2007. 3. gray-muir, ja. evidence based healthcare: how to make health policy and management decisions. new york: churchill livingstone; 1997, p. 61. 4. white, rd. recommended standards for the newborn icu. journal of perinatology. 2007; 27: s4-s19. 5. walsh wf, mccullough kl, white rd. room for improvement: nurses’ perceptions of providing care in a single room newborn intensive care unit. advances in neonatal care. 2006; 6 (5): 261-270. d e v e l o p m e n ta l r e s o u r c e s kathleen a. vandenberg, phd this column provides our readers with current information regarding developmental resources related to nidcap and developmental care. conferences nidcap congress in aalesund place: aalesund, norway date: june 10-12, 2008 email: www.helse-sunnmore.no/default. asp?menu=3004 neonatal comfort: analgesia, sedation and individualized loving care place: madrid, spain date: june 12-14, 2008 email: www.mkt.de/ipokrates/html/ seminar.htm neonatal pharmacology sponsored by contemporary forums place: boston, massachusetts, usa date: june 19-21, 2008 email: www.cforums.com 21st european congress of perinatal medicine place: istanbul, turkey date: september 10-13, 2008 email: www.kenes.com/ecpm/ national association of neonatal nurses 24th annual educational conference “navigating neonatal care: a safe passage home” place: fort lauderdale, florida, usa date: september 24-27, 2008 email: www.nann.org/i4a/pages/index. cfm?pageid=803 science meets our hearts “attachment and the early years” place: british columbia, canada date: september 25-27, 2008 email: www.idpofbc.ca/calendar/view_ entry.php?id=25&date=20080926 a world wide view of breastfeeding place: vienna, austria date: october 1-3, 2008 email: www.velb.org; www.ilca.org; or www.stillen.org developmental interventions in neonatal care annual conference sponsored by contemporary forums place: denver, colorado, usa date: october 1-4, 2008 email: www.cforums.com academy of neonatal nurses 8th national neonatal nurses meeting place: washington, dc, usa date: october 8-12, 2008 email: www.neonatalnetwork.com/nn3/ nndc2008program.htm second congress of european academy of paediatrics-eap european society of paediatric research/ neonatology/neonatal intensive care place: nice, france date: october 24-28, 2008 call for abstracts now open: eap2008@ mail.vresp.com infant development in neonatal intensive care (idnic): “closing the gap between research and practices” place: paris, france date: december 11-12, 2008 email: www.info-congres.com publications early development and the brain linda gilkerson and rebecca klein, editors. published by zero to three, national center for infants, toddlers and families. cost: $359.99 early development and the brain is made up of several teaching units which include detailed lecture notes, learning goals, student handouts, powerpoint slide presentations, reference lists and optional activities. this is a scientifically sound curriculum which utilizes the expertise of nationally recognized developmental and neuroscience professionals from over 23 institutions, including the yale child study center, harvard medical school and the erikson institute to bring the reader extensive information which provides a fresh approach to teaching and learning this material. chapters include prenatal development, neurobehavioral observation, brain basics, brain imaging, stress, sensory processing, maternal drug use, and language and the brain. understanding newborn behavior & early relationships j. kevin nugent, constance h. keefer, susan minear, lise c. johnson, and yvette blanchard. forward by t. berry brazelton. this book is the handbook and manual for learning the newborn behavioral observations (nbo), a complementary assessment to the neonatal behavioral assessment scale (nbas) (brazelton, l973). the nbas may be used as a diagnostic tool to assess newborn neurological and behavioral difficulties; the nbo was designed to enhance clinicians to share observations of their newborn with parents to begin the process of parent-infant interaction. as brazelton states: “my dream is that all neonatal centers will train professionals in the use of the nbo to help them share observations of newborn infants with their parents. however, when professionals find unusual or deviant behavior in the neonate, they should also be able to turn to a trained nbas observer to conduct the nbas. i would like every center to have the nbo for relationship building, and the nbas for a more detailed diagnostic assessment of neonatal behavior.” we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to kathleen vandenberg’s email: kavandenberg@yahoo.com developmental observer • �008 • 1� 18 • �008 • developmental observer for modifying the environment, intervening behaviorally, and adding a pharmacologic component when other interventions are not successful. in addition, an interdisciplinary team rounds on these infants weekly, providing care recommendations that enhance communication with the family and healthcare team. this manner of conducting developmental rounds in our center is called “hands,” an acronym for help for any neonatal developmental situation. on march 6, 2008 all members of our nidcap team, including hospital administration, our staff and our community interventionists celebrated the opening of our nidcap training center. to complete the story of the birth of our nidcap center, we must mention the families that have enriched and guided us along the way. families provide us with the rewarding energy that makes a difference in our work. a recent letter from one of the parents whom we had supported with nidcap wrote, “the developmental care caleb received really made a difference. i feel like caleb and i have a different “bond” than usual...it’s kind of funny...he likes to hold onto my fingers when he is eating, and my holding him on my chest still soothes him just like it did with kangaroo care in the nursery.” clearly, we believe the nidcap model provides a framework to transform the way staff care for babies and their families. we are pleased to be part of an organization that helps us provide meaningful connections between parents and their babies since that is the most powerful relationship that makes a difference in the lives of infants and families. nidcap training centers from around the world continued from page 9 with björn what you see is what you get and what i see is all good. most of us are always searching for the ultimate handbag, the perfect pair of shoes, the best book to take on holiday with björn you don’t need to search any more you have the ultimate nidcap neonatologist, the most enthusiastic organizer of viking games, the most loyal of friends and colleagues, high moral standards, nifty on statistics, apparently low maintenance, provided he gets regular top ups from mother nature. what more could a baby want. björn cherishes the support and influence his wife, children, and now grandchild have made in his professional career. he is further rejuvenated by his closeness to nature, sailing on his boat and camping in the forest. he considers his dogs as among his co-regulators, often joining him on long walks through the woods. he utilizes this time for reflection and has grown to value the importance of reflective process and its impact on his thoughtfulness. nidcap profile continued from page 14 what would you like to share with parents who have infants in the nicu today? linda: just keep your baby close to you and touch her and massage her and talk to her and love her for exactly who she is. be open to whatever happens. get to know your child very well. be there 100% for your child because what you put into it is what you are going to get out of it. children need so much and babies born prematurely need even more. stay connected to your child. i am connected to my daughter and i hope she always wants to be connected to me. for parent energies, i suggest that you exercise and get a lot of sleep and you manage your life so that you can be there for your child who has special needs. i got eight hours of sleep a night, i exercised, and i ate healthy and had dinner every single night with my child. i participated in her life, 100%, in whatever she found interesting. i studied with my daughter every single night. you have to be emotionally and physically supportive of your child. be around other children, both with disabilities as well as normal children. i’ve taught my daughter not to give up. now that she’s on her own in college she knows what to do and what not to do. and the only way children are going to learn to internalize it is that when they fail you don’t put them down. you tell them “don’t worry you will get it better next time.” stay totally positive with them. you have to know when to push and when not to push. that is important to understand between a mother and a father and a child. you have to get to know what works and what doesn’t work with them. amara: i visited the nicu this past summer and saw the babies lying in incubators. it’s pretty amazing how they go from that, like how i went from that, to who i am now. there are a lot of technological developments that (the nicu occupational therapist) was telling me about that they didn’t have when i was younger and so that’s a positive. parents could look at that increasing technology today and how it helps with development and helps aid certain needs of the baby and i just think that if you surround yourself with love and positivity that you can get through anything. family voices continued from page 13 nestled within his bed, caleb holds onto his mother’s finger. developmental observer • �008 • 1� subscribe today! developmental observer nidcap federation international board officers, members and staff president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens. harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@ cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens. harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu tracy price-johnson, ma faculty at ucdhsc and the family centered care consultant at the children’s hospital in colorado email: price-johnson.tracy@ tchden.org roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr karen smith, rnc, med nidcap senior trainer st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: kavandenberg@yahoo.com victoria youcha, edd child development specialist children’s medical associates alexandria, va email: vyoucha@gmail.com david wahl director of development and administration email: nfidirector@nidcap.org we invite you to subscribe by going to www.nidcap.org and selecting subscribe on the nfi website. subscription period: 1 year ($15) 2 years ($25) 3 years ($35) the official newsletter of nidcap® federation international ® nidcap federation international (nfi) www.nidcap.org by order of establishment n i d c a p t r a i n i n g c e n t e r s national nidcap training center children’s hospital boston, boston, massachusetts usa contact: sandra m. kosta, ba email: sandra.kosta@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center, oklahoma city, oklahoma usa co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu carolina nidcap training center wakemed, division of neonatology, raleigh, north carolina usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu or jhelm@wakemed.org colorado nidcap center the children’s hospital, denver, colorado usa director and contact: joy v. browne, phd, rn email: browne.joy@tchden.org west coast nidcap and apib training center mills college, department of education, oakland, california usa director and contact: kathleen vandenberg, phd email: kvandenb@mills.edu st. luke’s nidcap training center st. luke’s regional medical center, boise, idaho usa contact: karen m. smith, rnc, bsn, med email: smithka@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital, camden, new jersey usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu scandinavian nidcap center astrid lindgren children’s and karolinska university hospital, stockholm, sweden contact: ann-sofie gustafsson, rn, bsn email: nidcap@karolinska.se french nidcap center university hospital, brest, france co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr the dutch nidcap training center of leiden leiden university medical center, leiden, the netherlands director and contact: celeste maguire, rn, ms email: nidcap@lumc.nl or c.m.maguire @lumc.nl sophia nidcap training center erasmusmc-sophia, children’s hospital, rotterdam, the netherlands co-director and contact: monique oude reimer, rn email: m.oudereimer-vankilsdonk@ erasmusmc.nl centro latinoamericano nidcap otamendi buenos aires, argentina director and contact: graciela basso md, phd email: grace.basso@gmail.com uk nidcap training centre at st. mary’s st. mary’s nhs trust, london, england director and contact: inga warren, dip cot, msc email: inga.warren@st-marys.nhs.uk university of illinois medical center at chicago (uimcc) nidcap training center university of illinois medical center at chicago, chicago, illinois usa contact: jean powlesland, rn, ms email: jpowlesl@uic.edu the nidcap training center at connecticut children’s medical center connecticut children’s medical center hartford, connecticut usa contact: dorothy vittner, rn, bs email: vittner@sbcglobal.net nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa contact: tammy casper, msn, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital brussels, belgium contact: delphine druart, rn email: ddruart@hotmail.com become a member of the nfi the nfi has expanded opportunities for membership to certified nidcap professionals, nidcap trainees, and families of premature infants. please join us! for more information and the online application form, visit our website at: www.nidcap.org/become.html refl ection refl ection or the refl ective process has been described by a number of educational theorists as: “the continuing conceptualization of what one is observing and doing;”1(p13) “thinking on your feet;”2(p54) “going toward the center of what you are doing…to invest in the present moment with full awareness and concentration;”3(p451) “knowing in action;”2,4 “…mindfulness, allowing one to move away from habitual or automatic behavior, from familiar formulas, and from doing routine things in a routine way;”5(p.428) and fi nally: “the process of ‘feeling,’ ‘seeing,’ or ‘noticing’ what it is you are doing; then learning from what you feel, see, or notice; and fi nally, intelligently, even intuitively, adjusting your practice.” 3(p436) as tremmel3 points out, to practice refl ection one has to change the way one’s mind works. refl ection is an ongoing dynamic process which challenges the caregiver to pay attention to “her thoughts, feelings, inner experiences, values, and behaviors,”6(p5) as well as the thoughts, feelings, behaviors, and experiences of other caregivers, and of the most important people in the infant’s life, his or her parents. the role of refl ection in the implementation of the nidcap approach to care “refection as a framework for practice is not typically articulated in action-oriented, intensivist care work. yet, with the move toward developmental care, refl ective practice, by necessity, becomes a focus.” 7(p8) the critical importance of refl ection in implementing relationship-based developmental care cannot be overstated. refl ective practice provides the foundation for the attunement and connection between caregivers and the infants and families for whom they care. as gilkerson and als8 observe, the connection formed between the infant and caregiver “strengthens the capacity to nurture relatedness between parent and infant.”(p8) refl ective practice also strengthens the relationship between the caregiver 2009 vol. 3 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profi t membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certifi cation of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the offi cial newsletter of the nidcap® federation international supporting and sustaining refl ective practice rodd hedlund, med “there are two ways of being creative. one can sing and dance. or one can create an environment in which singers and dancers fl ourish.” warren g. bennis continued on page 2 table of contents supporting and sustaining refl ective practice ...................................................... 1 supporting families .................................. 6 message from the nfi president ........... 8 nidcap training centers from around the world ...................................... 9 nidcap profi le ........................................ 10 family rounding ...................................... 12 facilitating interdisciplinary communication ........................................ 13 family voices ........................................... 14 supporting breastfeeding ..................... 15 developmental resources .................... 17 current developmental research ........ 19 letters to the editors .............................. 20 � • �009 • developmental observer and the infant’s parents, as well as other caregivers. relationships at this level are of critical importance to the infant’s growth and development. as eggbeer9 and her colleagues note, “the quality of the relationships that parents and professionals establish on behalf of the child can enhance or diminish the effect of whatever technical skills and knowledge practitioners bring to their work with children and their families.”(p53) reflection also helps us examine our own practice and the way we respond to our own work. it fully engages the intellectual and emotional work inherent in relationship-based developmental care. in addition, it assists us in implementing the nidcap approach to care and in facilitating change in the routine based, protocol driven, high-tech environment of the intensive care nursery. “to cope with and work through the changes which affect them…[professionals] must deal with the emotional process of ‘letting go.’”10 (p 33) letting go of the past and moving into the future…integrating new knowledge into practice. the act of changing is more than an “event.” change for human beings is both a psychological and an emotional process. the way a caregiver typically performs a routine or procedure has psychological meaning to her…it gives her a sense of comfort, a feeling of control and a belief in being able to effect an outcome. however, when this course or flow of interaction is interrupted via the introduction of a new innovation, there can be a chain of emotional responses, such as anxiety, loss, even anger.10 change may produce a sense of uneasiness, a lack of direction, a sense of unfinishedness, and insecurity. as perlman and takacs10 state, “to cope with change effectively, organizations must consciously and constructively deal with the human emotions associated with it.”(p33) als and gilkerson11 have identified three conceptual elements of developmentally supportive care that require changes in the individual caregiver’s practice, the nicu culture, and the hospital system as a whole. these elements involve viewing developmentally supportive care as process-guided, relationshipbased, and systems-oriented. “a process-guided approach to care requires a flexible mind to continuously assess the infant’s behavioral and physiological needs and requires flexible procedures that allows one to creatively adapt caregiving. implementing a process-guided rather than a task or procedurally-based model is challenging in any setting, and particularly so in an acute care environment, which by necessity, is oriented to standard protocols and caregiving routines. relationship-based care puts into focus the connectedness and mutuality of all involved: infants, family, and the professional caregivers in the system. systemsoriented care is implemented within the dynamics of an existing social system. to grasp the systems perspective, it is necessary to step back from the immediate situation and examine the forces operating in the larger environment—both positive and constraining forces; taking the pulse of the system before offering solutions.”(p184) the nicu developmental team should have access to unit-specific training and consultation, including a process consultant and psychological support (e.g., psychiatric nurse, licensed clinical psychologist, psychiatrist, or social worker) to assist them in reflecting on the process of implementation itself as well as on the emotional content of the work.12 a semi-annual publication of the nidcap federation international © 2009. articles from developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd printed on recycled paper nidcap federation international (nfi) contributions we would like to thank all of our individual donors and the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation developmental observer s u p p o r t i n g a n d s u s ta i n i n g r e f l e c t i v e p r a c t i c e continued from page 1 developmental observer • �009 • � developmental observer • �009 • � the practice of reflection “developmental care is inherently reflective. there are no protocols that tell you exactly what to do. instead, ongoing observations and continuous feedback from the baby [as well as the family] guide care [and your interactions with them].” 5(p435) the successful implementation of reflection requires that reflection be practiced before, during, and after our interactions with infants, their families, and the professional caregivers who care for them.6 practicing the reflective process includes the following steps: before the interaction: preparing for the moment preparing oneself before an interaction requires moving from a state of preoccupation of the days events, to returning to “mindful awareness;”3 preparing oneself to invest in the upcoming interaction with full awareness and concentration. for example, in preparing for a caregiving interaction with an infant, one might consider: (1) reflecting upon the caregiving that the infant will currently be offered; (2) reflecting upon what caregiving events in the past have challenged the infant and what co-regulatory supports have been most effective in comforting and soothing the infant during necessary medical and nursing procedures; (3) reviewing past developmental reports that have been written and reflecting upon the recommendations that were made; and (4) gathering all necessary supplies that will be needed to care for the infant to ensure that the interaction is not interrupted once care has begun (e.g., leaving the infant’s bedside to search for a forgotten pacifier). in preparation for being with parents as they come to be with their infant, one might consider reflecting upon: (1) current developmental observation reports and recommendations, including the infant’s apparent goals, strengths, and needs; (2) current medical/nursing recommendations and any new information concerning the infant’s growth and development that might be shared with the parents; (3) how one will greet the parents, welcoming them to their infant’s bedside; (4) setting up the bedside environment that will offer privacy (e.g., perhaps a screen), comfortable chairs for the parents to sit on, and a place to store their coats and personal belongings; (5) how the parents might be engaged in assisting in caregiving (e.g., feeding, bathing, diaper changing, co-regulatory support, facilitation of skin-to-skin holding, etc.); and (6) what questions the parents might have and what professionals might be available to answer specific questions pertaining to their infant’s care (e.g., lactation specialist, neonatologist, social worker). during the interaction: in the moment delivering care in an individualized and supportive manner within a relationship-based developmental framework requires the caregiver to: “... be here, now, to invest in the present moment with full awareness and concentration. bringing your mind back from its many wanderings to mindful awareness.”3(p451) to be here and now for the infant during caregiving interactions: this means helping the caregiver see the experience of the care recipient12 and responding in a developmentally supportive manner to the infant’s behavioral story. as gilkerson13 observes, the reflective process is an effort to move beyond the task-oriented nature of intensive care toward relationship-based caregiving in intensive care nurseries. the caregiver must first, make a mindful effort to release her mind from the day’s past and future events so that she can truly see, hear, and feel the “humanness” of the infant; and then, intelligently, even intuitively adjust her interactions with the infant to further enhance her relationship with the baby and his or her family. to be here and now for the family as they come to be with their baby: this involves supporting them in what comes naturally to them, to be a mother and father, to be with and for their baby. as lawhon14 observes, “relationship-based caregiving implies that the nurse makes a human connection with the infant and consequently is invested in furthering the beginning parent-infant relationship. the nurse understands and appreciates the infant’s apparent goals and not only modifies his or her approach, but supports the parents in helping their infant achieve these apparent goals.”(p55) to be here and now for the nicu staff that may be resistant, ambiguous, questioning, or unsure of the developmental process: this involves listening and “holding” their feelings and perspectives. as bettlheim and rosenfeld15 reflect: “we can begin to understand another person’s behavior only if we start with the assumption that the reasons or motives that lie behind his actions…seem good to him (p107)...[we must] proceed on the assumption that the other person’s thoughts and actions are worthy of being considered in the most positive way.” (p119) it is only through the process of “walking in the shoes” of others that we may begin to understand and reflect upon the motives, and actions of the “other.” by holding within “the mind’s eye” another person’s feelings, ideas, and concerns one can, as belensky and colleagues reflect, “discover the experiential logic behind these ideas (feelings and concerns); the ideas become less strange and owners of the ideas cease to be strangers.”16(p115) after the moment: reflective supervision “relationship-based developmental care requires reflection rather than action; it requires staying connected and open to the other person’s feelings; it is system oriented and process based; and it demands suspension of judgement and focus on the life giving forces of the other person.” 17(p57) � • �009 • developmental observer relationship-based developmental care requires changes in the individual caregiver’s practice, the nicu culture, and the hospital system. the building and nurturing of relationships at each of these three distinct levels can best be served by the creation of a reflective supervisor role within the nicu. as als and gilkerson observe, “...supervision is a relationship for learning where time is set aside on a regular basis, with an experienced and trusted professional, to explore the ‘imperfect processes’16 of professional practice and one’s own responses to the work.”7(p8) providing reflective supervision for each developmental team member as well as the developmental specialist and/or nidcap trainer is of utmost importance. as gilkerson5 states: “relationship-based work makes one conscious of one’s feelings in interactions—one’s emotional world—and that is the very place that [most nicu caregivers] have been trained to avoid. it is my belief that the greatest challenge in infant-family work across all settings is the emotional experience of the work.” (p426) the reflective supervisor is available to listen, reflect, and provide the emotional understanding and regulation for those professionals involved in the implementation of this relationship-based work. as shahmoon shanok notes, the supervisory relationship is a place where “strengths are emphasized and vulnerabilities are partnered.”18(p40) in speaking about the process of reflective supervision, and the role of the reflective supervisor, gilkerson5 cites jeree pawl’s “platinum rule:” “do onto others as you would have others do onto others.”19(p7) fenichel1 described reflective supervision as a relationship for learning between the reflective supervisor and the reflective practitioner or supervisee. this learning relationship consists of three essential elements: regularity, collaboration, and reflection.5 regularity involves: “just being there, each time and on time; being fully available, without interruptions or telephones ringing.”5(427) collaboration involves: sharing power; making sure mutual expectations are clear; communicating openly. finally, reflection, which is used in four ways: reflection before action, reflection in action, reflection on action and reflection for action. reflection before action involves preparing oneself to invest in the upcoming interaction with full awareness and concentration. reflection in action has been described by schön2 as “thinking on your feet,”(p54) or “focusing on the present moment, simultaneously doing and learning and coming to know.”3(p438) reflection on action refers to “slowing down the process to reflect”8(24) after the interaction or a “mode of research activity undertaken in tranquility, off-line...,”3(p446) as experienced through individual reflection (or inter-subjective reflection) and one’s participation in a reflective supervisory session; “stepping back in order to go forward.”8(p24) reflection for action involves integrating: (1) what one has learned before and in the moment (i.e., reflection before and in action) and (2) what one has learned through individual reflection and in the course of participating in a reflective supervisory session (i.e., reflection on action). this newly gained knowledge and insight is then applied to one’s future interactions (i.e., reflection for action) with the infant, parents, staff, the nicu system, the hospital, and/or the community.20 within this framework, both the reflective supervisor and the reflective practitioner function “like researchers on the scene, not searching for certainty but focusing on the present moment, simultaneously doing, learning, and coming to know.”5(p428) gilkerson and shahmoon shanok21 describe a seven-phase process to assist the reflective supervisor, who may not be trained in mental health, in how to incorporate the three essential elements, discussed above, as the dialogue between reflective supervisor and reflective practitioner begins. this seven-phase process consists of the following categories: (1) preparation; (2) greeting and reconnecting; (3) opening the dialogue and creating the agenda; (4) gathering information; (5) formulating hypotheses; (6) considering next steps; and (7) closing (see table, page five). as gilkerson17 observes, “in a range of settings and with practitioners from a variety of disciplines, we have found that reflective supervision effectively supports change toward relationship-based practice and sustains it over time.”(p426) a reflection in summary, reflective practice is a dynamic, ongoing process that includes preparing oneself before the interaction; mindfully engaging in the interaction; and thoughtful individual reflection after the interaction. it is a process that many of us have been introduced to, and practiced, as we were learning the nidcap approach to care in the following ways: through our observations of infant-caregiver interaction; through the development of our observational report and recommendations for care; through the process of sharing our report with staff and family members; through the implementation of the nidcap advanced practicum;22 and through learning to administer and score the assessment of preterm infants’ behavior (apib23). each one of these steps of learning called upon reflection to effectively integrate this innovative approach to care. just as important, however, is the mindful review and reflection of one’s work with a reflective supervisor. this process nurtures our ability as professional caregivers to implement relationship-based developmental care. participating in reflective supervision helps us to maintain and further refine our reflective polymorph films, inc., 1983 developmental observer • �009 • � skills, as well as support us in our day-to-day interactions with families and our colleagues. as gilkerson24 observes, “...one has to experience being heard, respected, and challenged within the context of safety...i do think that the quest for reflection is truly a quest...and not complete for a long, long time...if ever!” the process of reflection and reflective supervision supports nicu professionals to learn and grow personally and profes sionally as they journey toward the challenging but rewarding experiences of implementing the nidcap approach to care. as als17 reflects: “the implementation of relationship-based developmental care is geared toward fostering nurturing relationships among caregivers and the infants and families they care for, among the caregivers themselves, and between the developmental care facilitators and the caregivers.” (p57) the supervisory session: regularity, collaboration, and reflection preparation the first step is getting ready, shifting from one’s present preoccupation to a state in which it is possible to be fully open to another and to take in the state of the other. we stress to each new supervisor that she will need some time, even if just a couple minutes, to get herself together---to clear her mind, clean off her desk, put the phone on “do not disturb,” and begin to create a protected environment for herself and the supervisee. greeting and reconnecting the supervisor greets the supervisee in a friendly way and makes a brief but personal connection. this helps both participants prepare for what is to come. if the supervisee has just rushed from another task, the greeting helps her make the transition to the calm space of the supervision session. opening the dialogue and creating the agenda with experience, most supervisors settle upon a ritual way of opening the session. their supervisor might ask, “how has this week been for you?” or simply say, “let’s begin.” just as new supervisors may need maps and guideposts, they also sometimes need to have suggested openings, ways to bridge the greeting and the serious work of the session. since this can be an awkward moment for beginners, we suggest that supervisors find a few opening that feel both right and productive and use those as they gain comfort in the role. then the supervisor’s task is to listen carefully and attentively. what is on the supervisee’s mind? what would he/she like to focus on? when the supervisee experiences, session after session, that the supervisor really will begin just where he/she is, a sense of collaboration and safety is created. sometimes the supervisor will know just where to go; other times she will need the supervisee’s help. it is better to ask than to guess: “you have shared so much. what would you like us to focus on today?” gathering information when an issue or concern has been identified, the next step is to gather the details: what exactly happened, what was said, what the supervisee experienced, what he/she observed the other experiencing, etc. it is tempting to rush in and seek solutions or to normalize, but we encourage details, he/she is also constructing the story of the event and perhaps becoming aware of his/her own attitudes and reactions for the first time. formulating hypotheses the collaboration continues as the supervisee and/or supervisor begin(s) to share hunches about what is going on and what might be helpful. hypotheses are generated in an open, tentative exploration. the supervisee is helped to reflect on his/own position and to try on another person’s perspective. there should be no rush towards closure. considering next steps non-clinical practitioners come to supervision with problems to solve, uncertainties to clarify, and issues that are affecting their dayto-day work. after gathering information and formulating hypotheses, the supervisor guides the conversation toward consideration of next steps. this not only gives the practitioner direction, but also helps him/herself during the session. the supervisor might ask, “in the time we have left, given all you have shared and observed, how might you approach your next home visit? what might help you to hear, validate, and contain the feelings that you anticipate the family expressing around the new diagnosis? what are some steps you might take to prepare for the home visit?” as with formulating hypotheses, this is a collaborative process. the supervisor’s greater experience may be a resource at this stage, as the supervisee imagines what might happen in a situation to ones the supervisor has experienced many times. closing the supervisor ends the session with some appreciation of the work done and a confirmation of the next supervision contact. text from gilkerson & shahmoon shanok, 2000; 429-430. references on page 21 vigeland park, oslo, norway � • �009 • developmental observer on monday, january 16, 2006 we, edwin and joyce, became, after a far-too-short pregnancy of twenty-five weeks and six days, the parents of our two sons, doug and flenn. after the burdensome delivery of our little lads, the first acquaintance was one marked by grief, in spite of the many earlier gloom and doom warnings. how could these tiny boys (30 cm, 660g and 945g, smaller than a lengthwise folded a4 sheet of paper) ever survive? after a hectic start the reality starts to dawn on us a little. we are “parents at a distance” of babies that used to be safe in their mother’s womb. they received continuous care (24 hours a day, many physicians, nurses and a multitude of machinery) in the intensive care unit of the sophia children’s hospital in rotterdam. after their birth, we experienced quite contradictory feelings: happiness and anxiety; love and grief; involvement and distance; hope and fear. next to these feelings, which fought for precedence in both of us, joyce also suffered from physical complaints after an extremely tough delivery (forceps delivery, breech presentation, and a placenta forcefully removed under anesthesia) and was troubled by insomnia. what followed after birth (and occurred even before birth) were the many long talks with physicians, who pointed out to us the possible consequences, complications, and chances of survival. complications which we would have liked to tune out, because our visits to the boys made anxiety turn into some hope and happiness…. every day was to be a day we were going to enjoy! the second night, however, we were given terrible information. flenn had a pulmonary hemorrhage and his heart had stopped beating. joyce, who was still in the maternity ward, had been told that flenn had died. upon hearing this, edwin dashed to the hospital from the ronald mcdonald house. thankfully, flenn’s heart started beating again. after many hours of utter nightmare, disbelief, anger, incomprehension and lots of questions, we fortunately regained some hope—a slight chance of survival, but a stable (yet life-threatening) situation. miraculously, our flenn pulled through again and again. but regrettably, in the four months in hospital this pulmonary hemorrhage was not the only setback. it proved very difficult to wean him off the ventilator, and after a viral infection at a later stage, we had to start all over (flenn was placed back on the ventilator). doug, during his hospital stay, developed much better than his brother. apart from the operation on his patent ductus arteriosis, everything, very gradually, went in the right direction. we saw him grow, and more and more band-aids and tubes disappeared. things that were bound to give the shivers to any parent became common to us, as if this was the most natural thing in the world for us (that realization hurt too!). in one day we witnessed ten heel pricks, one blood transfusion, replacement of the gastric and ventilator tube, and the insertion of a new central venous line—all in one day—and it just seemed as common as dirt to us. we just sat and watched helplessly…very annoyed and emotional! every time we got our little lads quiet again something nasty would happen and the whole process started over again. the small steps forward we saw, the steps backward we tended to trivialize. everything was going to be all right in the end. limitations and complications we would gladly put up with. our boys didn’t need to do well in school; they didn’t have to be champions in sports. we would be content with them horsing around as healthy, happy boys in our garden. what became most important was every time our little guys had made a step in the right direction. there were also moments when we could find enjoyment in just holding our sons. kangaroo care was fantastic (although a bit strained due to the many wires). we tried to be with them as much as possible and gave them vitamin “l” (love). meanwhile, joyce expressed milk continuously but was sometimes disappointed by the amount of milk produced. this was, however, the only thing we could do…. s u p p o r t i n g f a m i l i e s melissa johnson, phd doug and flenn, nestled skin to skin by their mother, with their father looking on. two precious sons: a dutch family tells their story monique oude reimer, rn, co-director of the sophia nidcap training center in rotterdam, netherlands, shares this powerful story of the birth and recovery of premature twin boys, as told to her by their parents. each paragraph provides opportunities for professionals to reflect on what can be done to support parents through this journey. edwin and joyce moen the newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.com. the assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.com for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. developmental observer • �009 • � the boys underwent examinations that made us very anxious. eyes, ears and bones needed to be checked and also brain scans were regularly performed. the eye check-ups were horrible. the eyes were kept open with an eye speculum so the doctor was able to inspect them with a laser (it appeared like this to parents, though the laser was not used during this examination). in our case, fortunately, there were no observable complications and anomalies in this area. there were, however, white spots on both of their brains, but this might turn out well. what a tremendous relief! after two months of intensive care in rotterdam the boys got promoted. we moved to the high care unit in a peripheral hospital. still we had mixed feelings again. on the one side, we had to leave the reliable and excellent care in rotterdam and the kind people at the ronald mcdonald house. on the other side, the great step homewards to the unknown hospital! unknown, unloved, the latter feeling prevailed. the ambulance transport took a lot out of the boys. the trip apparently was very tiresome and on arrival at the hospital the oxygen was firmly increased. after a few weeks we moved forward step by step. from an incubator to an open crib, from a tube to a bottle, and oh, how happy we were with every milliliter they drank. we increasingly took over care from the nurses. we gave them their bottle and were encouraged to bathe them…and then they slept together in one crib. still we needed a good deal of getting used to, when they came off of the saturation monitor. now we only had our children to look at and no longer the monitor. after a few days without incidents the time came…we took our boys home to zeeland, a coastal province in the southwestern netherlands. the zeeland clay, the refreshing sea wind and our care will do them a lot of good! at the time of this writing, doug and flenn are nearly three years old and are doing great! their lungs remain weak and when a virus comes along they are bound to pick it up. several times this has led to a week’s stay in the local hospital, where the boys needed to be put on oxygen. also the pariboy nebulizer and the sprays are regularly used. as far as we can judge, their development, both cognitive and motor, is beyond expectation. we keep in close contact with rotterdam, and they too are proud of this success story. we are very grateful that our children could be treated in three excellent hospitals and that we are the proud parents of these little miracles of the world. in early 2008, doug and flenn became brothers to a little sister. meg came into the world after 40 weeks gestation. we now realize how carefree such a start can be! doug and flenn are wonderful brothers! and daddy and mummy…life for them will never be as carefree as in the days before the kids. many others who had to go through all this have grown apart or, on the contrary, together. we did our thing and always put all the wood behind one arrow, or as we say in dutch: “put our noses in the same direction.” together we hope that doug and flenn will go on to surprise us in the future! the brothers enjoying a day at the beach! the engagement in research is thought to be addictive; and indeed it shares many characteristics with other addictive agents and activities. why else would a researcher forgo most of life’s common comforts, a decent income, the small luxuries of evenings at home, free weekends, winter vacations in the sun, and social events shared with friends just for the sake of having fun? the researcher is jealous of every minute frittered away in idleness when it might be spent in pursuit of the elusive goal, the holy grail, the finding of a momentary “truth,” the discovery of yet another small aspect of the bigger mosaic of an emerging pattern, regularity, the all-consuming passion. the drive is great. yet so is the simultaneous fear that must be contained, if one is not to succumb to self-doubt. is the pattern really there? is it too elusive to be captured; too trivial to be meaningful; too multi-dimensional; too variable, too dependent on too many uncontrollable aspects that blur its shape, or make it vanish all together? the seeds of doubt germinate unexpectedly at any time, sprout in the middle of the night; cause the poor scientist to wake up despondent, questioning the clarity of earlier thought, and the thought itself. the feeling of futility, of chasing an illusion, is familiar to everyone engaged in the pursuit of scientific discovery. yet all it takes to overcome it, gain new hope, regain urgency and momentum, and the energy to press on, may be a validating comment, or a mere glimpse of evidence, a fleeting promise that the pattern, the heretofore elusive phenomenon, is about to reveal itself. that brings with it elation, and the endorphin release, that makes the struggle all worthwhile and simultaneously launches the next push. “there is no better high than discovery.”2 the verification of the dreamed for pattern, the good enough probability, the significant p-value, that emerges from a rigorous design and statistical test, will release a neuro-hormonal cascade that floods brain and psyche with that wonderful feeling and rush: “that’s it! it fits! it’s so! eureka! how might anyone ever have doubted it?” no sooner does the brain experience that neuro-euphoria, likely evolved through the millennia, and species-specifically human, when the newly uncovered regularity already pushes to conquer and penetrate the next still amorphous state to reveal its underlying structure, its “truth.” and so the cycle continues. as soon as results indicate that what began with a hunch discloses itself as indeed orderly, possesses a reproducible and meaningful pattern that may be articulated and communicated; as soon as the validation of one’s intuition, one’s best clinical judgment, takes the form of replicability, the researcher feels fulfilled, gratified, and happy, at least in the moment. research is the cyclical and ultimate exercise and practice of year-and often decade-long delay in gratification. each manyyear cycle begins with an intuition, an insight, a flash, associated with that pleasurable, scary, neurophysiological feeling of anticipation and promise. from there it evolves to fuller articulation. this is followed by the struggle to design an “airtight” trial to test the intuition’s worthiness, and to think of and build in all the controls for all the possible (i.e., currently imaginable) factors that might invalidate the thought. it goes without saying that these factors always are more numerous than ever imagined. by the time they emerge in the process of the trial, it likely is too late to bring them under control. they may well force a redesign and restart. once the variability within the sample is greater than the variability expected, due to the phenomenon under study, the trial is jeopardized, perhaps doomed. the researcher must be brave enough to fail. assuming the trial is set to go, next follows the quest for the resources required to conduct the trial, which means to inspire those in possession of the means to share their resources with the dreamer, the applicant. “normal science”3 may prefer to distribute resources and funding to those who validate the known, the status quo, well-accepted truths, rather than pursue novel thoughts that might raise uncertainty and discomfort. and finally the time arrives for trial implementation. the hardest lesson the researcher learns, often painfully and at great cost, is that conducting a trial requires that the current design and methodology (i.e. the best knowledge at the time the trial goes forward), must be held constant until the trial’s completion. inevitably, in the course of any study, the researcher learns a great deal in how to improve on procedures and methodologies, avoid pitfalls not recognized in the beginning, and add missing components, etc. yet modification of any aspect mid-stream may well message from the nfi president in pursuit of scientific knowledge: the passion of discovery “you are capable of more than you know. choose a goal that is right for you and strive to be the best, however hard the path. aim high. behave honorably. prepare to be alone at times, and to endure failure. persist! the world needs all you can give.”1 � • �009 • developmental observer continued on page 11 developmental observer • �009 • 9 newborn intensive care units became highly technological and sophisticated departments beginning in the 1960s. comparable to what happens in adult and pediatric intensive care units, skilled and specialized staff take care of the infants’ survival. however, in contrast to older patients, caregivers have very few benchmarks for preterm infants’ “normal” behavior. these small patients have limited physical and undefined mental capabilities to express their suffering in ways that are understandable to their caregivers. therefore, they are totally dependent on the healthcare team to interpret, understand and intervene to alleviate their distress. the driving motivation of our journey toward nidcap was to try to better understand what preterm infants and their families experience, to diminish their suffering, and also to induce well-being. since the late 1980s, the nicu of saint-pierre university hospital, and the medical and nursing staff directors shared this common goal. unrestricted parental access, supportive positioning of the infants, the implementation of skin-toskin contact (i.e., kangaroo care), and collaboration with child psychiatrists were, at that time, common practice. in 1997, an article evaluating nidcap1 drew our attention to the nidcap approach to care. scandinavian countries have always had a leading position in terms of quality of newborn care in europe, so we were quite interested in their approach to sensitive newborn care. initially, we wrote a nidcap research grant to go to boston in order to work with heidelise als, phd who designed the nidcap model.2 in the meantime, we got the information that a small group from brest, france was going to begin training in denver and we were invited to join them. an ongoing strong friendship and collaboration with drs. joy browne, jacques sizun and nathalie ratynski began in 1998. the first steps in the nidcap implementation were very challenging. we had to be humble (not always easy) and admit that profound changes had to occur in our unit. we soon realized that to become a nidcap training center was the most efficient way to transform the care within our unit. through patience, perseverance and countless hours of clinical and administrative changes, we have achieved our goal! our nidcap trainer is delphine druart, rn. she was nidcap certified in 2003 and received her apib certification in 2007 with her trainer, deborah buehler, phd. master trainers, joy browne, phd and agneta kleberg, rn, phd coached her to become a trainer. we are very grateful to her trainers who travelled as often as needed to bring us to our goal. the brussels nidcap training center was officially recognized in october 2007 during the nidcap trainers meeting in france. four other members of our staff are nidcap certified, three are in training and more are on the waiting list. implementing nidcap is a complex and stimulating process that has had some important effects in our national as well as our own nicu activities. it helped us to structure the arguments for enhancing family centered care in our country. we convinced politicians to change the law concerning maternity leave.3 a mother whose newborn infant is born prematurely and/or ill is now on maternity leave during the whole hospital stay and continues for 15 weeks after discharge, which is generally around the infant’s “term-age.” we were funded by the ministry of health to develop our nidcap training center, since this achievement was consistent with the goals of the national “quality of health programs.” from a clinical perspective, and to address the provision of painless and comfortable care, we developed a new device to put silicone catheters into the umbilical vein for long term parenteral nutrition.4 the diversity of european cultures and the regional differences in newborn practices were highlighted by the efforts of a european developmental care network led by a grant facilitated by jacques sizun. resulting joint efforts from the european nidcap training centers and opinion leaders in neonatology created an irreversible move toward developmental care implementation in an increasing number of nicus. we have faced several challenges in implementing the nidcap approach, including: understanding and integrating the synactive theory, sustaining the nidcap model, and the the brussels nidcap training center dominique haumont, md (training center director) and delphine druart, rn (trainer) continued on page 22 dominique haumont, md n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d 10 • �009 • developmental observer10 • �009 • developmental observer kaye spence (ks): how and when did you start your professional career? agneta kleberg (ak): i became a registered nurse in 1972 at lund which is in the very south of sweden. my first affiliation was in gällivare which is about 2000 kilometers away in the very north of our country. sweden is a small country. ks: when were you first introduced to nidcap? ak: i had read the theoretical framework of the synactive model and used it in a review article during my pediatric nurse education. after that i went to boston in 1990 together with björn westrup, md, phd. this is where i met heidelise als, phd. ks: what are your goals for nidcap? ak: to work toward improving the wellbeing and outcome of the preterm or sick newborn infant as well as supporting their parents in getting to know the language of their baby. i have a belief that healthy, happy families make the world a better place. ks: whom do you admire most? ak: nelson mandela and people who work towards strengthening relationships. ks: who are your mentors in relation to nidcap? ak: heidelise als—energetic and greatly inspiring, never ending support of my next step; inga warren—intelligent, reflective, analytic, and my best co-operator; and björn westrup—always supportive with an untiring engagement in spreading nidcap. all three have become very good friends. ks: what do you see as the most exciting thing about nidcap? ak: it works! you can see it at once. when applying nidcap, the baby relaxes and reorganizes her or himself. salivary cortisol levels have been found to recover faster after painful procedures, as well as other physiological and behavioral measures. nidcap promotes brain structure and function, decreases disability and behavioral problems and promotes parent-child interaction. isn’t that exciting! also i think nidcap training makes people change their minds, their attitude and their way of acting and respecting other people, including themselves. ks: what is your most memorable experience in the last 12 months? ak: watching a mother grow in her role as a mother and to see her self-esteem increase after a few sessions of support. this support can be provided through apib sessions, which include habituation and orientation items, as well as observation and reflection sessions with both the mother and father. one baby girl was born almost fullterm, but she was very small for date and was delivered by emergency caesarian section. her situation was very critical. to see her parents grow and feel confident and happy and also to follow nidcap trainees in their growth of this understanding is a very rewarding experience in my profession. ks: if you could change something (relating to anything)—what would it be? ak: i would like to change people’s minds so the world would be more humble, humane, joyful, and happy to live in. i know this is a very big task so i try to start with changing caregivers’ and parents’ minds by using the nidcap model. i also work to change my own habits as well. ks: now for some personal insights, tell me about your family. ak: arne, my husband, is a retired ent specialist. he is still working and travels to northern sweden (where they do not have enough physicians) for a week at a time. anders, our son, is studying medicine and is the joy and happiness of our life. he is engaged to sonja, so our family has expanded, which makes us very happy. we miss our beloved daughter annamaria. we lost her ten years ago in a car accident. she is still an important part of our family. we often talk about her. i keep her in my heart wherever i go and i talk to her every day. she has taught me a lot about agneta kleberg, rn, phd in this issue, i am pleased to profile agneta kleberg who is somewhat of a legend when it comes to nidcap training and promoting the nidcap philosophy. agneta is a nidcap master trainer, at the karolinska nidcap training center, stockholm, sweden, and works throughout europe with nidcap trainees. to date, she has trained 65 nidcap professionals (recertified more than five) and trained four nidcap trainers in approximately 30 newborn intensive care units. agneta is a very productive member of the nidcap team. n i d c a p p r o f i l e kaye spence, am, rn, rm, ms, fcn life and motherhood. i have brothers and sisters-in-laws and a wonderful mother-in-law—we have just celebrated her 100th birthday! ks: tell me about something that you like doing. ak: being out in the nature with our dog—we are expecting a new dog after the loss of dina who lived with us for almost 12 years. i like walking by the sea, swimming and facing the sun. ks: that sounds so relaxing, is there anything that you don’t enjoy doing? ak: i am not very fond of cleaning the house, although i very much like to have a clean house. ks: can you share with us any books that have left an impression on you? ak: it depends on the period of my life. three that come to mind are: irving stone’s book about vincent van gogh’s life; villhelm moberg’s “the new land”—about the swedish settlement in the usa during the middle of the 19th century. he was a nobel prize winner in literature; and mitch albom’s “tuesdays with morrie.” ks: do you have a favorite movie? ak: “mamma mia” made me feel happy and i like meryl streep and stellan skarsgård (who was my schoolmate during middle grade), as well as “one flew over the cuckoo’s nest.” ks: what are your favorite places? ak: the town helsingborg in sweden where i live. mölle a small village close to helsingborg where i have spent many summer holidays during my childhood and with my own children. pålsjö, a summer and winter outdoor bathing place (in helsingborg) where they have saunas and restaurants—and things like that—standing on columns in the water. these three places are my biotope. ks: that sounds so idealistic. how would you like people to remember you? ak: as a sincere, humane, insightful, mature, thoughtful, comprehensive, generous, respectful, open person who is a good friend, a dear mother and a loving wife. i know that it is diffi cult to accomplish all this but this is the way i try to live my life. ks: thank you agneta, i can see how you and nidcap complement each other. invalidate the trial. it is better to do something reliably and systematically, if less than perfect, than to adapt and adjust, as one moves along the path of a trial. a systematically implemented study will yield interpretable results. a “moving feast” will yield regret and confusion and belongs in the development and pilot phase, instead of the trial itself. most research trials require collaborators beyond the initiator with the burning question, the principle investigator. unless the leader is compelled by an urgent mission to uncover the phenomenon under study, he or she may fail to convince the others of its merit, the worthwhile nature of the knowledge to be gained, and the benefi t of participation. it behooves the researcher to identify that the benefi t outweighs the cost for those important to the trial. of all the collaborators, one’s research subjects are one’s most important, most valuable and most precious assets. shared benefi ts secure successful research conduct. to conduct research is often a lonely yet always an exhilarating path that prompts one to confi rm and stand up again and again for what one holds most important in one’s work and perhaps even one’s life. it tasks others to poke holes, and raise questions, doubts and criticism, which in turn serves to sharpen the researcher’s thinking and rigor in designing and conducting the next study. when the new discovery, or insight ultimately prevails, and brings about the inevitable sea change engendered by a worthwhile fi nding, the next status quo, the new “business as usual” is in the offi ng and thus paves the way for the next revolution. first they laugh at you, then they fi ght you, and then they say they knew it all along.” mahatma gandhi research conducted for the sake of insight and knowledge to better the state of humanity and the world will always be fulfi lling, satisfying and enriching.2 heidelise als, phd references: 1. wilson e. on human nature: revised edition: harvard university press; 2004. 2. wilson e. consilience: the unity of knowledge: random house; 1998. 3. kuhn t. the structure of scientifi c revolutions. chicago: university of chicago press; 1970. message from the nfi president continued from page 8 developmental observer • �009 • 11 family rounding tracy price-johnson, ma having been in the nicu in the early 1990’s, i spent all of my days (“visiting” hours) by my daughter, hayley’s bedside. hayley’s first four and a half months of life were spent in a nicu in oklahoma hooked up to every machine imaginable. a variety of teams flew in to figure out her diagnosis, prognosis and necessary treatment. it was a very frightening time for me as a first time mom ... part of my fear was the unknown. i was never involved in any discussions at her bedside or with any of the healthcare providers. i was asked to leave during report and shift change and was told i couldn’t look at her chart to formulate questions. today, as i visit families in the nicu in our hospital in denver, colorado, i see how much things have changed with nidcap’s presence in our nicu nursery. the nidcap assessments and developmental supports incorporated into the care of these precious babies is a vast improvement to the care my daughter received. in particular, the concept of “family rounding” has brought family members to the table to become part of the “team.” family rounding is the concept of including families in the decision making process with regards to the well-being of their child. families are welcomed as members of the healthcare team and are encouraged to be involved to the extent families are willing and able. coordination of care involving the families builds capacity and opportunities to educate and encourage family involvement which benefits the family and the entire healthcare team. family rounding happens routinely each morning in our nicu. parents are involved in every step of the process and decision making. the exchange of information is critical to understanding the families’ perspective for their child’s care and the healthcare team’s ideas for treatment. family rounding engages families right where they are---whether they know the “language” or not. the team works to engage families to help encourage and empower them to learn how to care for and advocate for their child’s best outcomes. it is a critical step in the process of family centered care. the differences made by nidcap suggestions have helped families in a multitude of ways; most importantly to feel a stronger connection with their baby. i know from my own experience, that when your child is hooked up to many foreign and frightening machines, you feel less equipped and prepared to be their parent. being included in your child’s care and care planning has proven to be the catalyst for parents feeling more competent in helping with basic things, like kangaroo care (i.e., skin-to-skin contact) and diaper changing. i spoke with ashley, a mother who received support from one of our hospital’s nidcap developmental specialists and she stated, “the nurses helped me to feel like i truly am my baby’s mom even though he is connected to all these machines and pumps. it is critical that they give me an understanding of my baby’s cues so that i can feel confident in providing his feedings and other care.” one of our nicu physicians, john kinsella, md spoke of the “power of reassurance from a healthcare provider a family really trusts.” this is the type of communication that is built during family rounds while a family is with their child in the nicu. this collaborative process facilitates comfort and a connection between families and staff that builds bridges of understanding to providing better care to infants with neurodevelopmental needs. another one of our neonatologists, peter hulac, md added “that family rounding gives the physicians and healthcare team a better understanding of what supports families need to make decisions for their child.” in speaking to sharon sables-baus, phd, pcnf-bc, a nidcap developmental specialist, she spoke of “giving families tips for understanding their babies cues, no matter how subtle.” she often works one on one with families who are first time parents and supports the developing parent-infant relationship while their babies are connected to life saving equipment. in making frequent visits to our nicu during family rounding, i felt encouraged as a parent of a nicu graduate. so much has positively changed from when hayley was a patient in a newborn intensive care unit. it was evident to me that nidcap has made a significant difference in caring for these infants and their families. our journey through the nicu would have been a vastly different experience if we had been exposed to nidcap and had the experience of family rounding. our family would have benefited greatly by being included in the care plans. we would have left the nicu as more competent parents had we learned what parents are learning today. the value of the partnership is that we all learn from one another and that makes us all better at what we do. 1� • �009 • developmental observer we welcome tracy, a member of the nfi board of directors, to share with us her nicu experiences and the concept of family rounding. she is currently a family centered care consultant at the children’s hospital, denver, colorado, and is a faculty member at the university of colorado, denver school of medicine. family rounding is the concept of including families in decision making made by healthcare providers regarding their child in the nicu. facilitating interdisciplinary communication carol matthews, otr/l and ginny laadt, phd, otr developmental observer • �009 • 1� advances in newborn intensive care technology and improved understanding of newborn pathophysiology have promoted increasing survival and subsequent homecoming for nicu infants and families. increases in infant survival rates have prompted parallel increases in the number and types of specialists who attend to ongoing infant and family needs. currently, nicu staff may include: bedside nurses and neonatologists; nurse practitioners; respiratory, occupational, and physcial therapists; speech and family therapists; educators; pediatric surgeons; ophthalmologists; cardiologists; orthopedists; and pediatric neurologists, among others. this large and multidisciplinary group of professionals provides many challenges for the effective implementation of nidcap...“a system wide intervention approach that strives to enhance relationships between infants and families and the professionals who care for them.”1(p133) to better facilitate staff, parent and infant communication within a developmental, relationship-based approach to care, porter-o’grady2 proposes a model for horizontal interdisciplinary communication. this model is depicted with the infant and family dyad in the center, surrounded by overlapping circles representing each discipline. in this horizontal network, communication occurs within the moment and over time, and proactive problem-solving is carried out through shared perspectives among multiple disciplines and sub-specialties. the measure of power is connectedness within a networked conversation among all participants. successful implementation of this model is dependent upon strategies that enhance formal and informal interactions among nicu and consulting staff, and that are also built into the organizational structure and physical environment of the nicu. examples of these strategies include: (1) moving from separate medical, developmental and social nursery rounds and reporting, to daily inter-disciplinary bedside rounds; (2) inviting parents to participate in their infant’s interdisciplinary rounds; (3) implementing regularly scheduled (usually monthly for extended care infants) collaborative staff-family care conferences (this proactive care continuity approach is in contrast to calling conferences only when an emergency arises, or only holding a “discharge planning conference” as the infant is being discharged from the hospital); and (4) integrating discipline specific staff lounges (often informal communications over coffee among colleagues can increase personal trust across disciplines). nurseries that have adopted the above strategies, among others, are finding that this inclusive atmosphere, rather than one of separation along discipline lines, saves staff time and diminishes parental anxiety. in an attempt to further facilitate inter-disciplinary communication and the allocation of staff services, our anchorage alaska nicu is considering the use of the new mexico system of risk triage (sort).3 “the primary use of the sort is to guide decision making regarding allocation of staff time and effort in the nurseries and after hospital discharge. the purpose is not only to allocate and shape services in ways that match infant and family needs and preferences, but also to insure that these services are provided in an efficient, effective, and timely manner.”(p340) the sort promotes individualized coordinated collaborative care from nicu admission, during the entire nursery course, and through transition from nursery to home and community. infant and family needs guide the decision making process regarding who, how, when, and at what level responses need to be orchestrated. discipline boundaries become a non-issue and collaboration built upon mutual trust and respect among individuals as team members, becomes the norm. in the case study below, ian’s family provides an example of how the sort system works: ian’s mother, anaya, was transported from their rural remote home for delivery at the university of new mexico medical center, having experienced two prior miscarriages. ian was born at 26 weeks carol matthews has worked as an occupational therapist for the past twenty years, and has been instrumental in implementing nidcap at the children’s hospital at providence alaska medical center, anchorage, alaska. virginia l. (ginny) laadt is recently retired from her position as assistant professor of pediatrics and creator and director of the developmental care program at the university of new mexico health sciences center, department of pediatrics, neonatology division in albuquerque, new mexico. continued on page 21 1� • �009 • developmental observer f a m i ly v o i c e s victoria youcha, edd i credit my mother with my ability to breastfeed my premature daughter successfully. she breastfed her three children and was so committed to the practice that i never considered anything else. today, at 83, she is surprised when people think she was unusual. she says all her friends breastfed and it was accepted as the best and easiest way to feed your baby. i breastfed my first child, who was fullterm, for more than one year. my second child was born at 29 weeks gestation, weighing 1191 grams or two pounds ten ounces, and i nursed her for about fourteen months. in the hospital she was a poky eater. when she came home she could only latch on at every other feeding because she was so weak. in spite of these obstacles i never doubted my ability to breastfeed her. my mother’s commitment to breastfeeding was part of her wider interest in childrearing issues, especially wet nursing. in the days before bottles and formula, wet nursing was an accepted practice and it has never really disappeared. today, there are frequent articles and passionate online discussions about wet nursing, cross-feeding, and breast-sharing. a few months ago the actress, salma hayek, made headlines when she nursed a hungry infant in africa. google “wet nursing,” and you get more than half a million results. celebrities hire wet nurses to avoid sagging breasts. working mothers are cross-feeding when they babysit for each other. there is even an employment agency for wet nurses. so what does an article about premature babies have to do with wet nursing? my mother’s stories about the history of wet nursing have helped me understand the magic of mother’s milk. being “a good mother” is so wrapped up with being able to feed your baby. i couldn’t hold my premature daughter for more than a week and i couldn’t feed her for more than a month. i expressed milk and banked it, but pumping every few hours was overwhelming, and the breast pump was a sad substitute for my baby. mother’s milk is powerful. when my daughter was in the nicu it would have helped me to know that there are many ways to nurture, that i wasn’t automatically a failure as a mother because i couldn’t feed my baby. perhaps understanding some of the history of mother’s milk would have given me some comfort. i didn’t know that parents of preemies are not alone -that throughout history mothers have shared their milk. babies have been fed by wet nurses and suckled by animals. winston churchill had a wet nurse and look how he turned out. my mother’s interest in the history of wet nursing and the beliefs surrounding the practice helped me understand childrearing in a new light. can i use what i’ve learned about the history of infant feeding to help new parents who are off to a difficult start? can you? here are some of the wet nursing stories my mother told me. from ancient times until recent history a baby was thought to acquire characteristics from its wet nurse. instruction books warned against those with red hair because the baby would have a bad temper. not unlike today, the ancient experts suggested looking for a candidate who was healthy, had a good disposition, and was a paragon of virtue. at one time, experts recommended avoiding the milk of animals because of the danger that the baby could start to look like a goat or a cow. even in the twentieth century the great tenor enrico caruso was convinced that he had acquired his glorious voice through his wet nurse. in the past, extended family support might also have included wet nursing. among the arawak indians a mother might start nursing and then hand the baby off to her own mother. one toddler was seen going from his mother to his grandmother, to maximize his food supply. in mid-nineteenth century france, the foundling hospital in aix en provence, found an ingenious way to increase the survival rate of abandoned babies. with the cradles arranged in rows, goats were let into the wards several times a day and would go bleating to their assigned “baby.” they would then straddle the cradle and move back the bedclothes with their horns so the infants could nurse. we welcome vicky, a member of the nfi board of directors, who writes from her unique intergenerational and historical perspective on the importance of mother’s milk. vicky is currently the director of brainline, a national outreach project on traumatic brain injury at weta, the public broadcasting station in the washington, dc area. she has also worked as a child development specialist at children’s medical associates in alexandria, virginia for over 24 years. lessons my mother taught me – why mother’s milk is best vicky youcha with her mother, geraldine. continued on page 22 supporting breastfeeding deborah e. schoch rnc, msn, ibclc cce, cpst healthcare professionals have the unique opportunity to educate new parents in caring for their infant. there are so many aspects of infant care to master, and the hope is that we can move our patients to a higher level of expertise and comfort by the time they are discharged from the hospital as a family. one of the most important choices is that of infant feeding. the choice can be somewhat confusing, because parents hear and read a variety of opinions concerning both breast and bottle feeding. for those couples considering breastfeeding as the feeding method of choice for their infant, it must be understood that it is a very personal decision. it can very easily be influenced by personal experience, commercialization, and culture. when the factor of prematurity is added, the decision can be even more difficult. parents are already dealing with a sick, immature infant. they may be facing a variety of emotions such as anger over the loss of a healthy infant, guilt that they caused the early delivery, or confusion as to what the days ahead may bring. the inability to put the infant directly to the breast, and the use of a breast pump may add to their many stresses. the benefits of breastfeeding the benefits of breastfeeding and providing breastmilk are numerous. breastfeeding or pumping assists the mother’s uterus to contract lessening her chances of postpartum hemorrhage. it increases her metabolism aiding weight loss and decreases the chance of adult onset diabetes, especially if she was a gestational diabetic. prolonged breastfeeding decreases chances of some cancers and osteoporosis.1 for the mother of a sick or premature infant it allows her to be part of both the team and treatment for her child. providing breastmilk builds her confidence as a woman, allows her to provide a species specific food that protects her infant’s immature body, and allows her to build a relationship with her infant that will include direct breastfeeding as her infant matures developmentally.2 the specificity of breastmilk outweighs formula. even the most recent advances to produce an artificial food for infants that mimics breastmilk, has not come close to paralleling the benefits that breastmilk provides the human infant. colostrum, the early milk, provides protein for rapid growth. it is rich in electrolytes that assist bodily functions. it provides immunoglobulins, iga, igg, and igm, which provide immunity. colostrum as well as transitional and mature breastmilk primes the gastrointestinal tract. this assists in the passage of meconium, containing higher levels of bilirubin, which if reabsorbed into the infant’s body can increase jaundice. breastmilk also primes the infant’s gastrointestinal tract with specific factors such as lactobacillus bifidus and lactoferrin which promotes an environment that deters abnormal flora from binding and entering the infant’s system, and thus promoting gastrointestinal health and motility. research has proven that premature infants who receive breastmilk have less chances of developing necrotizing enterocolitis.2, 3 supporting mothers to breastfeed mothers who wish to provide breastmilk should be encouraged to do so as soon as possible after delivery (ideally within six hours). this promotes adequate stimulation of the hormones prolactin and oxytocin which produce and release breastmilk from the breast. most pumping and supply problems extend from inadequate milk removal starting on the mother’s day of delivery. impaired milk production can be divided into three categories: preglandular which includes unfavorable hormonal production as a result of polycystic ovarian disease; glandular, which includes problems with the structure and function of the breast as a result of surgery or infection; and post glandular which includes any reason for ineffective or infrequent milk removal from the breast beginning on the day of delivery.1 it is the post glandular problems that deal with lactogenesis, the making of breastmilk, that are the most preventable. the two main causes for postglandular problems are a delay in initiating breast pumping and ineffective emptying of the breast. there are many reasons for a delay in initiating breast pumping. mothers may be too sick (e.g. preeclampsia), and some may desire to rest, and some are stressed over the premature birth. however, most deborah is the lactation consultant and coordinator of childbirth education at cooper university hospital in camden, new jersey. she is also a doctoral student at widener university in chester, pennsylvania. deborah has an interest in developmental readiness for breastfeeding and how healthcare professionals teach and portray breastfeeding to patients. developmental observer • 2009 • 15 times, it is the healthcare provider who does not provide the correct information, perform a complete historical and physical assessment, or initiate support. it is important for the healthcare provider to support the mother of the premature infant and assist them in being successful when providing breastmilk. mothers with the possibility of having impaired milk supply due to preglandular or glandular problems need to be assessed and followed closely during the first several weeks for milk production. just because they present with a medical or surgical condition that may alter breastmilk supply, does not mean they cannot provide some breastmilk or breastfeeding to their infant. mothers who wish to provide breastmilk should be educated on its benefits, use and cleaning of the pumping equipment, the mechanics of breastmilk production, proper breastmilk storage, and the fact that they are an active participant in the care and health of their infant. mothers should also be made aware that stress and sleeplessness could hinder breastmilk production. measures should be taken to keep the mother wellinformed about her infant’s care so pumping is initiated and maintained around her rest periods. ideally a mother should initially pump every three hours for about 15 minutes. as milk production increases, usually within two to five days, methods of ensuring that breastmilk is removed effectively from the breast can be adjusted to meet the needs of the mother.4 the impersonal experience of pumping can be alleviated by encouraging the mother to pump at her infant’s beside or by supporting the mother to engage in skin-to-skin contact with her infant. skin-to-skin contact enhances hormone stimulation. it also supports the infant’s growth, development and learning via the mother’s scent, close physical contact, and the feel of breastfeeding. mothers should be encouraged to utilize skin-toskin contact frequently and observe their infants for signs of feeding readiness such as sucking motions, nuzzling at the breast, licking the breast, and latching with and without milk exchange.5 healthcare providers are essential at this time because they can: assist with the positioning of the premature infant throughout the course of breastfeeding (as these infants may have lower tone for optimal breastmilk extraction); support the mother to recognize positive and negative infant cues which may effect breastfeeding; and support the mother in identifying her infant’s sleep and awake states so that breastfeeding can be initiated when the infant is in his most alert state. at home, mothers might consider taking warm showers, enjoying a back massage, listening to baby music, pumping in the infant’s room, or experiencing the scent of the infant (e.g., clothing brought home from the hospital that the infant has worn) to increase milk supply and the milk ejection reflex. breastmilk is very forgiving in every sense of the word. there are very few medications that attach in amounts significant enough to risk its use. common medications such as antibiotics, thyroid medication, most herbal preparations, blood pressure medication, and pain medication do not attach well, and therefore are not transferred easily to the infant. mothers who may be hypothyroid, diabetic, hypertensive or who carry the herpes virus (or hepatitis b and c) can still provide breastmilk with minor medical intervention (e.g., hepatitis b vaccine and immunoglobulin the infant).1 the role of the healthcare provider in supporting breastfeeding understanding breastfeeding allows the healthcare provider to play an important role in assisting the mother who makes choices that are important to her infant’s health. professional guidance, as well as the camaraderie of other mothers in the intensive care setting, provide an amazing support system that allows a connection between women with similar problems and similar goals, that of providing breastmilk and breastfeeding their infant. some of the best friendships and support systems are between mothers whose infants are in intensive care, because they can relate their fears and work toward common solutions in a supportive healthcare environment. breastfeeding has not only grown as an art, but also as a science. as more and more mothers breastfeed, and as more women present with various lifestyles, medical problems, and knowledge, breastfeeding will need healthcare providers who can offer concrete information and evidence on its benefits for the infant. healthcare providers should encourage mothers to: be as informed as possible on the subject of breastfeeding; discuss breastfeeding with someone who is knowledgeable such as a physician, nurse or lactation consultant; and attend classes and support groups with others who share their ideas concerning infant feeding. mothers benefit from support and encouragement in their decision to provide breastmilk as the feeding method of choice for their infant. our capacity to support this immensely powerful journey, the journey of childbirth and parenthood, allows us as healthcare providers to serve as catalysts to guide mothers to higher levels of skill, knowledge and confidence in the breastfeeding of their infants. references: 1. riordan j, & auerbach k. breastfeeding and human lactation. third edition. massachusetts: jones & bartlett; 2005. 2. rodriguez n, miracle d, & meier p. sharing the science on human milk feedings with mothers of very low birth weight infants. journal of obstetrics, gynecological and neonatal nursing. 2005; 34(1): 109-119. 3. gartner l, morton j, lawrence r, naylor a, o’hare d, & schanler r. breastfeeding and the use of human milk: american academy of pediatrics policy statement. pediatrics. 2005; 115(2): 496-506. 4. morton j. strategies to support extended breastfeeding of the premature infant. advances in neonatal care. 2002; 2(5): 267-282. 5. dodd v. implications of kangaroo care for growth and development in preterm infants. journal of obstetrics, gynecology and neonatal nursing. 2005; 34(2): 218-232. 1� • �009 • developmental observer developmental observer • �009 • 1� diane ballweg is the high-risk newborn development clinical nurse specialist at mayo clinic, rochester, minnesota where she guides implementation and maintenance of nidcap-based care. diane has successfully supported nurseries to integrate evidence-based individualized developmental and family centered care into facility systems and caregiving for over 15 years. this column provides our readers with current information regarding resources of interest. articles browne jv. chemosensory development in the fetus and newborn. newborn & infant reviews. 2008; 8(4): 180-186. butler s & als h. a different view: individualized developmental care improves the lives of infants born preterm. acta pediatrica. 2008; 97: 1173-1175. graven sn & browne jv. sensory development in the fetus, neonate, and infant: introduction and overview. newborn & infant reviews. 2008; 8(4): 169-172. graven sn & browne jv. sleep and brain development: the critical role of sleep in fetal and early neonatal brain development. newborn & infant reviews. 2008; 8(4): 173-179. graven sn & browne jv. auditory development in the fetus and infant. newborn & infant reviews. 2008; 8(4): 187-193. graven sn & browne jv. visual development in the human fetus, infant, and young child. newborn & infant reviews. 2008; 8(4): 194-201. hack m. care of preterm infants in the neonatal intensive care unit. pediatrics. 2009; 123(4): 1246-1247. maguire cm, walther fj, van zwieten pht, le cessie s, wit jm, & veen s.no change in developmental outcome with incubator covers and nesting for very preterm infants in a randomized controlled trial. archives of disease in childhood – fetal and neonatal edition. 2009; 94(2): f92-f97. maguire cm, walther fj, van zwieten pht, le cessie s, wit jm, & veen s. follow-up outcomes at 1 and 2 years of infants born less than 32 weeks after newborn individualized developmental care and assessment program. pediatrics. 2009; 123(4): 1081-1087. ment lr, kesler s, vohr b, katz kh, baumgartner h, schneider kc, delancy s, silbereis j, duncan cc, constable rt, makuch rw, & reiss al. longitudinal brain volume changes in preterm and term control subjects during late childhood and adolescence. pediatrics. 2009; 123(2): 503-511. silberstein d, geva r, feldman r, gardner jm, karmel bz, rozen h, & kuint j. the transition to oral feeding in low-risk premature infants: relation to infant neurobehavioral functioning and motherinfant feeding interaction. early human development. 2009; 85: 157-162. treyvaud k, anderson va, howard k, bear m, hunt rw, doyle lw, inder te, woodward l, & anderson pj. parenting behavior is associated with the early neurobehavioral development of very preterm children. pediatrics. 2009; 123(2): 555-561. vittner d. reflective strategies in the neonatal clinical area. advances in neonatal care. 2009; 9(1): 43-45. wielenga ja, smit bj, merkus mp, wolf mj, van sonderen l, & kok jh. development and growth in very preterm infants in relation to nidcap in a dutch nicu: two years of follow-up. acta paediatrica. 2009; 98(2): 291-297. books nugent jk, petrauskas bj, & brazelton tb. the newborn as a person: enabling healthy infant development worldwide. new jersey: john wiley and sons, inc. 2009. this new text explores the history, current understanding, and future of newborn behavioral support and research. contributors from a variety of disciplines and countries include the editors noted above, as well as, jean cole, jim helm, john kennell, marie reilly, daniel stern, karin stjernqvist, and many others. conferences nicu and ei feeding of the medically fragile infant october 2-3, 2009, ft. worth, texas the workshop presents factors impacting successful oral feeding and strategies to support preterm and ill fullterm infants in, or just discharged from, a nicu. for information please visit: www.educationresourcesinc.com/index.cfm?event=coursedeta ils&categoryid=11&courseid=107. neonatal oral-motor assessment scale (nomas) 2009 certification courses october 22-24, walnut creek, california november 19-21, san francisco, california d e v e l o p m e n ta l r e s o u r c e s diane ballweg, msn, rnc, ccns developmental care in the moment relaxing together. 1� • �009 • developmental observer this certification course provides nomas® training to evaluate sucking patterns in preterm and fullterm infants and differentiation of disorganized from dysfunctional patterns. for information please visit: www.nomasinternational.org. prechtl’s method of qualitative assessment of general movements basic and advanced courses september 23-26, 2009, modena, italy the basic course focuses on understanding and assessing general movements at different ages. the advanced course is for those who previously attended the basic course and passed the course test. for information please visit: www.biomedia. net or contact silvia terragni at silvia. terragni@biomedia.net (english). hospitals and communities moving forward with patientand family-centered care: an intensive training seminar – partnerships for quality and safety october 26-29, 2009, minneapolis, minnesota conference objectives are to increase understanding of patientand family centered care; explore excellence in integration into policy, program, practice, education, and facility design; learn how to integrate into hospital quality and safety programs and public reporting; and create action plans for institutional change. for information please visit: www.familycenteredcare.org/events/ seminars.html. the 25th annual developmental interventions in neonatal care conference november 4-7, 2009, washington, d.c. the conference explores multidisciplinary care of high-risk newborns and presents developmental and behavioral strategies to enhance outcomes. plenaries, concurrent sessions, and pre-conference workshops are provided. for information please visit: www.contemporaryforums.com. hot topics in neonatology december 6-8, 2009, washington, d.c. the purpose of this annual meeting is to provide a forum for discussion and critical appraisal of interventions for infants requiring intensive care. for information please visit: www.hottopics. org/index.php. the 5th international conference on brain monitoring and neuroprotection in the newborn january 21-23, 2010, clearwater beach, florida the conference explores the means to understand, monitor, protect, and treat the developing brain of preterm and fullterm newborns. for information please visit: www.cme.hsc.usf.edu/brain10. the 23rd annual gravens conference on the physical and developmental environment of the high risk infant, in collaboration with the march of dimes february 3-6, 2010, clearwater beach, florida the focus of this meeting is the science of development, developmental care practice, unit design, and the influence of the environment on neurodevelopment of infants, work of caregiving staff, and support for families. for information please visit: www.cme.hsc.usf.edu/gravens10. we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to diane ballweg at: developmentalobserver@nidcap.org. the nfi presents the 20th annual nidcap trainers meeting reflection: our vision for individualized developmental care the westin chicago river north, chicago, illinois october 3-6, 2009 hosted by the university of illinois medical center at chicago nidcap training center, this year’s meeting will be a celebration of the organization’s history as well as its future. program highlights include presentations by drs. heidelise als, joy browne and linda gilkerson on developmental care; shared accomplishments of current training efforts across all sixteen nidcap training centers; and abstract presentations on the latest developmental care research. the 20th anniversary of the annual nidcap trainers meeting will be an opportunity for participants to reflect on how a unique and powerful vision evolved into an international movement that is changing the future for infants in intensive care. currently these meetings are open to the nfi board of directors, nidcap trainers, trainers-in-training, training center directors as well as those key professionals invited by them to attend. further information may be found at: www.nidcap.org. the annual membership meeting of the nfi tuesday, october 6, 2009 9:00-10:45 am astor room the westin chicago river north 320 n. dearborn avenue chicago, il 60610 all nfi members are welcome to attend. developmental observer • �009 • 19 pain: can you see it? the nidcap observations are highly sensitive to infants’ expressions of comfort and distress but does this mean that nidcap trained professionals are better at evaluating pain? most preterm pain scales draw on specific facial, behavioral state and physiological responses, not all of which appear on the nidcap catalogue of behaviors. since slater, cantarella, franck, meek, and fitzgerald1 investigated the connection between cortical and behavioral activity in preterm infants during heel lance, the skeptics have given more credence to behavior as a measure of pain. cortical haemodynamic responses were shown to correlate with behavioral components (facial expression) more than with the physiological components (heart rate and oxygenation) of a validated pain scale (premature infant pain profile2). although this partly confirms other reports that facial expression is the most reliable indicator of pain3 they also found that facial expression was not consistent, and that an infant may feel pain without a facial reaction. others have pointed out that facial actions may be dampened in preterm infants.4,5 pain scales may thus underestimate pain experience. the university of columbia in vancouver has a very active team researching preterm pain behaviors. they applied the nidcap catalogue of behaviors and the neonatal facial coding system6 to study the responses of preterm infants during blood taking.7 behavioral patterns varied between infants with different characteristics. infants born at lower gestational age (<30 weeks) showed significantly more finger splaying, fisting and mouthing during the procedure than older infants. finger splay and fisting were also more common among infants with a history of many invasive procedures. facial twitches were more likely to be seen in infants who had been sickest. holsti and grunau have built on this work to develop and validate a new system of evaluating pain—the behavioral indicators of infant pain (biip),8 that includes fisting and finger splay movements, as defined for nidcap, in addition to other validated behavioral pain indicators (i.e., facial expressions: brow bulge, eye squeeze, nasolabial furrow, horizontal mouth and taut tongue), and behavioral state and physiological responses. clinically it is often difficult to observe facial expression due to obstructions (e.g., attachments for affixing ncpap, eye protection during phototherapy, or the infant’s position). the addition of developmentally specific hand movements is therefore very useful, although the visibility of these actions may be hampered if an infant is swaddled. an unexpected finding was that not all the infants cried during the painful procedure. validation of the biip was carried out on a cohort of 92 infants, born between 23 and 32 weeks gestation, mostly at 32 weeks post conceptional age. the biip showed significant changes between baseline, lance/squeeze and recovery periods of blood taking. inter-rater reliability was high and the authors report that this scale is easily scored by both experienced and inexperienced behavioral observers from video recordings; it is not known if it is equally easy to use at the bedside. the biip has also been tested with a comparison of invasive (blood taking) and non invasive (diaper change) interventions.9 the biip scores were higher during blood taking and this effect was increased if blood taking was preceded by a diaper change, this is consistent with previous research by the same team that showed heightened responses to clustered care in very preterm infants.10 although the time taken for both interventions was similar, the biip scores remained high after diaper change, suggesting that infants can have an intense and prolonged reaction to events that are assumed to be relatively innocuous. few pain scores have undergone such a thorough validation process as the biip and it is a welcome innovation. it appears to be easy to administer and the addition of hand actions makes it practical for babies whose facial behaviors cannot be easily observed, and it also compensates for the fact that some infants may not show facial responses to pain. further research is required to look at feasibility and usefulness of the biip for measuring prolonged pain (e.g., post operative pain) and to establish validity with infants at younger gestational ages. a web based training video is available. holsti and grunau remind us that “... from an evolutionary perspective, behavioral indicators are designed specifically to elicit caregiving,” 8(p270) and they have shown that patterns of pain response are complex, sometimes surprising, and vary according to different infant characteristics. validated pain scales are useful, and necessary considering the lamentably poor pain management practices reported around the world. the biip looks like a promising clinical and research tool. nevertheless, observation of a wider range of behaviors, in context with nidcap, will usefully supplement formal pain scoring, and vice versa. references: 1. slater r, cantarella a, franck l, meek j, & fitzgerald m. how well do clinical pain assessment tools reflect pain in infants? plos medicine. 2008; 5(6):e129 www.plosmedicine.org, accessed 7.5.09. 2. stevens b, johnston c, petryshen p, & taddio a. premature infant pain profile: development and initial validation. clinical journal of pain.1996; 12:13-22. 3. grunau rv & craig kd. pain expression in neonates: facial action and cry. pain. 1987; 76: 277-286. 4. johnston cc & stevens bj. experiences in a neonatal intensive care unit affects pain response in preterm neonates. pediatrics. 1996; 98:903-25. 5. grunau re, oberlander tf, whitfield mf, fitzgerald c, & lee sk. demographic and therapeutic determinants of pain reactivity in very low birth weight neonates at 32 weeks postconceptional age. pediatrics. 2001; 107: 105-112. 6. peters jwb, koot hm, grunau re, de boer j, van druenen mj, tibboel d, & duivenvoorden hj. neonatal facial coding system for assessing postoperative pain in infants: item reduction is valid and feasible. clinical journal of pain. 2003; 19(6): 353-363. 7. holsti l, grunau re, oberlander tf, & whitfield mf. specific nidcap movements help identify acute pain in preterm infants in the nicu. pediatrics. 2004; 114(1): 65-72. 8. holsti l & grunau, re. initial validation of the behavioral indicators of infant pain (biip). pain. 2007; 132: 264-272. 9. holsti l, grunau re, oberlander tf, & osiovich h. is it painful or not? discriminant validity of the behavioral indicators of infant pain (biip) scale. clinical journal of pain. 2008; 24: 83-88. 10. holsti l, grunau re, whitfield mf, oberlander tf, & lindh v. behavioral responses to pain are heightened after clustered care in preterm infants. clinical journal of pain. 2006; 22, 757-764. inga warren, dip cot, msc c u r r e n t d e v e l o p m e n ta l r e s e a r c h �0 • �009 • developmental observer l e t t e r s t o t h e e d i t o r s dear editors, as a veteran of neonatal care, i appreciate and respect the impact nidcap has on the outcomes of our smallest and most fragile patients. however, the process and commitment to become nidcap certified is lengthy and overwhelming to most nurses. the increasing technology used in patient care and higher patient acuity is stretching our nursing staff to their limits. with updated regulations and mandates requiring constant mandatory training, the bedside nurse’s ability or willingness to engage in nidcap’s in-depth program may be limited. i hope that the nidcap federation international will consider these confounding factors and create training programs that take into account the real life barriers faced by the bedside nurse. motivating nurses to learn developmental principles will require enhancing their reasons to learn and overcoming their perceived barriers. this can be achieved by creating short (30-45 minute) learning opportunities that give practical information on how nurses can incorporate developmental principles into their daily practice. providing ceus that nurses can use to maintain national certifications will enhance the attractiveness of the program. there is great value in having nurses pursue and obtain nidcap certification. but it is an injustice to our patients if we do not explore ways to expose nurses to developmental principles that they can immediately incorporate into their daily care. susan bedwell, ms, apn, ncns-bc clinical nurse specialist ou medical center, neonatal services editors’ response dear susan, thank you for your letter. we appreciate your observations on the influence and impact of nidcap on the care of infants and their families. since the integration of surfactant replacement and high frequency ventilation, newborn intensive care has reached a plateau in the technological advances. this may be why nicu professionals appear to be reflecting more on the “less technological” aspects of improving the care of infants and their families. clinical and research evidence of the effectiveness of nidcap has led to its increased study and use in newborn intensive and special care nurseries. in addition to the benefits apparent in the “outcomes of our smallest and most fragile patients” that you described, we wish to point out there is also evidence demonstrating the value of nidcap with healthy and older preterm infants (buehler et. al.1 and als et. al.2). you describe accurately the level of commitment and professional growth inherent in the nidcap educational program. you are in one of the few states that provide nidcap training without charge to those professionals seeking this instruction. hundreds of nidcap professionals have spent untold time and energy in transforming their understanding and approach into the relationshipbased individualized developmentally supportive care formalized by nidcap. typically, a core group of the nicu staff becomes nidcap certified, and functions as a clinical resource and a team of developmental specialists, creating many different types of didactic and hands-on educational in-service programs for the nicu as a whole. increasingly, attention is being paid to the ways in which this model can be disseminated most effectively. in fact, our last issue of the developmental observer described an excellent self-paced computer cd program “ndc: neonatal developmental care” developed by terri daniels, med and nidcap professional. every nidcap trainer provides formal nidcap training as well as various professional lectures and workshops on developmental principles and implementation of individualized relationship based care. often these lectures, as well as the educational opportunities offered annually by organizations such as contemporary forums’ conference on developmental interventions in neonatal care, are approved for continuing education credits. the nfi which guides the dissemination of nidcap, continues to explore ways to reach nursery professionals and families around the world. we invite our readers to participate in this and other developmental discussions by sharing their own observations and suggestions with us. sincerely, the editors references: 1. buehler dm, als h, duffy fh, mcanulty gb & liederman j. effectiveness of individualized developmental care for low-risk preterm infants: behavioral and electrophysiological evidence. pediatrics. 1995; 96: 923-932. 2. als h, duffy fh, mcanulty gb, rivkin mj, vajapeyam s, mulkern rv, warfield s, huppi p, butler s, conneman n, fischer c, & eichenwald e. early experience alters brain function and structure. pediatrics. 2004; 113: 846-857. from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org. developmentally yours, rodd hedlund, med senior editor deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd associate editors developmental observer • �009 • �1 references: 1. fenichel e. zero to three work group on supervision and mentorship: learning through supervision and mentorship to support the development of infants, toddlers, and their families. in fenichel e, ed learning through supervision and mentorship: a source book. arlington, va: zero to three; 1992. 2. schön da.the reflective practitioner: how professionals think in action. new york, ny: basic books; 1983. as cited in als h & gilkerson l. developmentally supportive care in the neonatal intensive care unit. zero to three. 1995; june/july: 2-10. 3. tremmel r. zen and the art of reflective practice in teacher education. harvard education review. 1993; 63(4): 434-458. as cited in gilkerson l & als h. role of reflective process in the implementation of developmentally supportive care in the nicu. infants and young children, 1995; 7: 20-28. 4. schön da. educating the reflective practitioner. san francisco: jossey-bass; 1987. as cited in als h & gilkerson l. developmentally supportive care in the neonatal intensive care unit. zero to three. 1995; june/july: 2-10. 5. gilkerson l. irving b. harris distinguished lecture: reflective supervision in infant-family programs: adding clinical process to nonclinical settings. infant mental health journal. 2004; 25(4): 424-439. 6. eggbeer l, mann t, & seibel n. reflective supervision: past, present, and future. zero to three. 2007; 28(2): 5-9. 7. als h & gilkerson l. developmentally supportive care in the neonatal intensive care unit. zero to three. 1995; june/july: 2-10. 8. gilkerson l & als h. role of reflective process in the implementation of developmentally supportive care in the nicu. infants and young children, 1995; 7: 20-28. 9. eggbeer l, fenichel e, pawl jh, shahmoon shanok r, & williamson, gg. training the trainers: innovative strategies for teaching relationship concepts and skills to infant/family professionals. infants and young children. 1994; 7(2): 53-61. 10. perlman d & takacs gj. the 10 stages of change. nursing management. 1990; 21:33-38. 11. als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology. 1997; 21 (3):178-189. 12. als h. program guide newborn individualized developmental care and assessment program (nidcap) an education and training program for health care professionals. revised edition. boston: nidcap federation international, inc.; 2006. 13. gilkerson l. understanding institutional functioning style: a resource for hospital and early intervention collaboration. infants and young children. 1990; 2: 22-30. 14. lawhon g. providing developmentally supportive care in the newborn intensive care unit: an evolving challenge. journal of perinatal neonatal nursing. 1997; 10(4): 48-61. 15. bettelheim b & rossenfield aa. the art of the obvious: developing insight for psychotherapy and everyday life. new york, ny: alfred a. knopf;1993. as cited in gilkerson l & als h. role of reflective process in the implementation of developmentally supportive care in the nicu. infants and young children, 1995; 7: 20-28. 16. belenkey mf, clinchy bm, goldberger nr, & tarlue jm. women’s ways of knowing: the development of self, voice, and mind. new york, ny: basic books;1986. as cited in als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology. 1997; 21 (3):178-189. 17. als h. earliest intervention for preterm infants in the newborn intensive care unit. in guralnick mj, ed the effectiveness of early intervention. baltimore: brookes publishing co., 1996:47-76. 18. shahmoon shanok rs. the supervisory relationship: integrator,resources, and guide. in e. fenichel ed, learing through supervision and mentorship: a source book. arlington, va: zero to three; 1992. 19. pawl jh & st. john m. how you are is as important as what you do...in making a positive difference for infants, toddlers, and their families. washington dc: zero to three; 1998. as cited in gilkerson l. irving b. harris distinguished lecture: reflective supervision in infant-family programs: adding clinical process to nonclinical settings. infant mental health journal. 2004; 25(4): 424-439. 20. gilkerson l. personal communication; june 29, 2009. 21. gilkerson l & shahmoon shanok r. relationships for growth: cultivating reflective practice in infant, toddler, and preschool programs. in osofsky jd & fitzgerald he ed, waimh handbook of infant mental health. new york: john wiley & sons, inc. 2000; 2: 33-79. as cited in gilkerson l. irving b. harris distinguished lecture: reflective supervision in infant-family programs: adding clinical process to nonclinical settings. infant mental health journal. 2004; 25(4): 424-439. 22. als h. guidelines for advanced nidcap praticum: following an infant and family from admission to discharge and transition to home. boston, ma: nidcap federation international, inc.; 2006. 23. als h, lester bm, tronick e, & brazelton, tb. towards a research instrument for the assessment of preterm infants’ behavior (apib). in he fitzgerald, bm lester, & mw yogman eds, theory and resarch in behavioral pediatrics. new york, ny: plennum press. 1982; 1: 35-63. 24. gilkerson l. personal communication; june 23, 2009. s u p p o r t i n g a n d s u s ta i n i n g r e f l e c t i v e p r a c t i c e continued from page 5 gestation with an appropriate size for his age at birth (aga) and was admitted to the nicu where individualized developmentally supportive care is provided as baseline services for all infants and families. during his first week of life, the inter-disciplinary services team determined that ian’s biomedical condition including his early gestation at birth, met the sort infant biomedical criteria for high probability, or risk, of experiencing later neurodevelopmental disorders. for the sort category reflecting environmental risk, the criteria for presence of high risk was met, since ian was his parents’ first live birth following two miscarriages and he would be returning to an area with scarce resources. the intersection of high biomedical and high environmental risk prompted the assignment of the neurodevelopmental occupational therapist to join ian’s basic medical care team of primary physician and nurses. the family therapist was identified as primary back-up for the team in this trans-disciplinary services model. guided by family therapits, a dynamic plan and process were set in motion. in-depth assessment of short and longer term family financial, physical and educational needs were carried out over the next few days. unit, hospital, community and state services available to support ian and his family were identified, discussed with the family, and put in place along the care continuum. per sort profile guidelines, in addition to updates on daily rounds, conferences with all relevant providers and extended family members were held at one month intervals and prior to discharge. plans for extended care continuity and developmental services following hospital discharge were put into place in order to facilitate ian and his family’s transition from hospital to home and community. thus, the two organizational models as depicted by both porter o’grady1 and sort,3 help to facilitate inter-staff and staff-family collaborations based on infant and family needs. both of these models make it possible for inclusive, coordinated, creative problem-solving to occur within the ever changing and complex environment of the nicu. references: 1. lawhon g & hedlund re. newborn individualized developmental care and assessment training and education program. journal of perinatal and neonatal nursing. 2008; 22(2):133-144. 2. o’grady tp & malloch k (2007). quantum leadership: a resource for healthcare innovation. second edition; 2007. http://www.amazon.com/quantum-leadership resource-healthcare-innovation/dp/0763744603/ref=sr_1_1? ie=utf8&s=books&qid=1225326350&sr=1-1>. 3. laadt vl, woodward bj & papile la. system of risk triage: a conceptual framework to guide referral and developmental intervention decisions in the nicu. infants and young children. 2007; 20(4): 336-344. s u p p o r t i n g f a m i l i e s continued from page 13 �� • �009 • developmental observer implementation of architectural changes that were made based on the nidcap approach to care (e.g., single rooms and developmentally inspired architectural concepts).5 one of our current challenges in being a nidcap training center is to promote developmental care and nidcap in resistant settings. the most current criticism of traditional neonatologists towards nidcap is the lack of randomized controlled trials that demonstrate a better outcome for the infants.6 on the other hand, there is substantial scientific evidence supporting the importance of care practices clearly enhanced by the nidcap program.7 therefore, we might try to study nidcap as a facilitator of well-accepted and important issues in newborn care. our international collaborating networks can play an important role in this research field. it is also important to reflect on effective nidcap implementation and maintaining the quality of this approach with the implementation of the nidcap nursery certification program. a further challenge that we currently face within our own setting is to identify and train a second nidcap trainer. nidcap has sensitized caregivers to reflect on how they provide care in the nicu. considering the number of international visitors to our nicu and subsequent applications for nidcap training, this has proven to be an important introduction and promotion of the nidcap approach. currently we are providing training to three university level iii units and a few are already on a waiting list. our small, but intensive experience in becoming a training center, allowed us to realize how strong the nidcap model is when implementing the different levels of co-regulation while interacting with infants, parents, caregivers, and hospital systems. nidcap was introduced in our nicu more than 10 years ago. we observed important changes far beyond our initial expectations and we know that this process is ongoing. the relationship-based circle begins with the infant, the mother and father, and the caregiver, but eventually expands out to a much broader web in and outside the hospital. references: 1. westrup b, kleberg a, wallin, lagercrantz h, wikblad k, & stjernqvist k. evaluation of the newborn individualized developmental care and assessment program (nidcap) in a swedish setting. prenatal and neonatal medicine. 1997; 2: 366-375. 2. als h, lawhon g, duffy fh, mcanulty gb, gibes-grossman r, & blickman jg. individualized developmental care for the very low-birth-weight preterm infant: medical and neurofunctional effects. journal of the american medical association.1994; 272: 853-858. 3. royal decree published 28 july 2006 (moniteur belge). 4. haumont d, gouder de beauregard v, van herreweghe i, delanghe g, ciardelli r, & haelterman e. a new technique for transumbilical insertion of central venous silicone catheters in newborn infants. acta paediatrica. 2008; 97: 988-90. 5. the physical and developmental environment of the high-risk infant. annual florida conference. graven s, white r, browne j. 6. symington a & pinelli j. developmental care for promoting development and preventing morbidity in preterm infants. cochrane database system review. 2006; (2):cd001814. 7. lawhon g & hedlund re. newborn individualized developmental care and assessment training and education program. journal of perinatal and neonatal nursing. 2008; 22, (2): 133-144. n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d continued from page 9 the first human milk bank in america was started in 1910 by francis parkman denny, a bacteriologist convinced of the power of mother’s milk. and because breastmilk is so vital for preterm infants, up until the 1920s, wet nurses lived in the hospital to feed premature babies. as my mother puts it, if prostitution is the oldest profession, wet nursing is the second oldest. it flourished for about 300 years, giving poor women a way to earn money or, at least, barter their milk for a place to stay and food to eat. on the other side of the equation the wet nurse provided the possibility of motherhood for the woman who could not nurse her own baby, and of a wider life for the woman who chose not to. it was often the only way for abandoned babies to survive. its story touches on the position of women, attitudes about children, the power of myth and the evolution of the modern family. even in what we think of as the modern scientific world the legacy of wet nursing and the myths surrounding it affect the way we look at breastfeeding, the balancing of motherhood and career, and the roles of husband and wife. sometimes it helps to step back from your problems and see the bigger picture. i hope that nicu staff will use these stories judiciously to relieve some anxiety and guilt and maybe even introduce a little humor. when talking with parents, staff may also wish to tell them my mother’s list of the three best things about mother’s milk—it’s healthy, it’s portable, and it comes in such cute packages. f a m i ly v o i c e s continued from page 14 three generations, vicky, sara and connor developmental observer • �009 • �� reflection r eflection or the reflective process has been described by a number of educational theorists as: “the continuing conceptualization of what one is observing and doing;”1(p13) “thinking on your feet;”2(p54) “going toward the center of what you are doing…to invest in the present moment with full awareness and concentration;”3(p451) “knowing in action;”2,4 “…mindfulness, allowing one to move away from habitual or automatic behavior, from familiar formulas, and from doing routine things in a routine way;”5(p.428) and finally: “the process of ‘feeling,’ ‘seeing,’ or ‘noticing’ what it is you are doing; then learning from what you feel, see, or notice; and finally, intelligently, even intuitively, adjusting your practice.” 3(p436) as tremmel3 points out, to practice reflection one has to change the way one’s mind works. reflection is an ongoing dynamic process which challenges the caregiver to pay attention to “her thoughts, feelings, inner experiences, values, and behaviors,”6(p5) as well as the thoughts, feelings, behaviors, and experiences of other caregivers, and of the most important people in the infant’s life, his or her parents. the role of reflection in the implementation of the nidcap approach to care“refection as a framework for practice is not typically articulated in action-oriented, intensivist care work. yet, with the move toward developmental care, reflective practice, by necessity, becomes a focus.” 7(p8) the critical importance of reflection in implementing relationship-based developmental care cannot be overstated. reflective practice provides the foundation for the attunement and connection between caregivers and the infants and families for whom they care. as gilkerson and als8 observe, the connection formed between the infant and caregiver “strengthens the capacity to nurture relatedness between parent and infant.” (p8) reflective practice also strengthens the relationship between the caregiver 2009 vol. 3 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmentalobserver the official newsletter of the nidcap® federation international supporting and sustaining reflective practice rodd hedlund, med “there are two ways of being creative. one can sing and dance. or one can create an environment in which singers and dancers flourish.” warren g. bennis continued on page 2 table of contentssupporting and sustaining reflective practice ...................................................... 1 supporting families .................................. 6 message from the nfi president ........... 8 nidcap training centers from around the world...................................... 9 nidcap profile ........................................ 10 family rounding ...................................... 12 facilitating interdisciplinary communication ........................................ 13 family voices........................................... 14 supporting breastfeeding ..................... 15 developmental resources .................... 17 current developmental research........ 19 letters to the editors .............................. 20 subscribe today! developmental observer nidcap federation international board of directors and staff we invite you to subscribe by going to www.nidcap.org and selecting subscribe on the nfi website. subscription period: 1 year ($15) 2 years ($25) 3 years ($35) the offi cial newsletter of the nidcap® federation international president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens. harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@ cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens. harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu tracy price-johnson, ma faculty at ucdhsc and the family centered care consultant at the children’s hospital in colorado email: price-johnson.tracy@ tchden.org roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr karen smith, rnc, med nidcap senior trainer st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu victoria youcha, edd child development specialist children’s medical associates alexandria, va email: vyoucha@gmail.com david wahl executive director email: nfi director@nidcap.org nidcap federation international (nfi) www.nidcap.org national nidcap training center children’s hospital boston and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: roger sheldon, md co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: browne.joy@tchden.org st. luke’s nidcap training center st. luke’s regional medical center boise, idaho, usa director: jerry hirschfeld, md contact: karen m. smith, rnc, bsn, med email: smithka@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey, usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofi e gustafsson, rn, bsn email: nidcap@karolinska.se connecticut children’s nidcap training center connecticut children’s hartford, connecticut, usa co-director: ann milanese, md co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk university of illinois medical center at chicago nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s hospital medical center cincinnati, ohio, usa director: patricia g. bondurant, mn, rn, cns contact: tammy casper msn, med, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be become a member of the nfi the nfi has expanded opportunities for membership to certifi ed nidcap professionals, nidcap trainees, and families of premature infants. please join us! for more information and the online application form, visit our website at: www.nidcap.org/become.html. by order of establishment n i d c a p t r a i n i n g c e n t e r s ® buenos aires, argentina is home to the centro latinoamericano nidcap otamendi which opened in april 2005. it is the most austral nidcap training center of the nidcap federation international and is currently the only spanish speaking center. our working conditions may be different from the us and european nidcap training centers due to the major socio-economical differences typical within a latin american country. in buenos aires, however, we have the privilege to have a level iii nursery that is situated in otamendi hospital, a private institution. our hospital accepts high risk pregnant women from other hospitals as a referral perinatal center and has 4,200 to 4,500 deliveries each year. the newborn intensive care unit (nicu) census averages 35 infants a day and we care for many premature infants as early as 24 weeks gestational age. our unit also has the capacity to perform surgeries in our own hospital. we have three medical doctors on duty each day covering the full 24 hours. there are 150 nurses on staff. as a private hospital in latin america, it is common to have middle to high socioeconomic patients in addition to those who are less advantaged. the families usually live near the hospital, and they have the possibility to be in the unit all day long. the unit is directed by dr. luis prudent and nurse manager stella roa. our nidcap training team consists of the following dedicated professionals: stella granatto (speech therapist), currently a nidcap trainer-in-training; maria luisa de anchorena and marcela constanza cerullo (psychologists); clarisa noales (occupational therapist); and marcela castellanos and carlos llama figueroa (neonatologists). since our center opened we have been very busy with a number of varied and challenging projects including the translation of the apib introductory chapter and manual1,2 as well as the training documents from the english to the spanish language. our nidcap center is also working on a book based on developmentally supportive family centered care. in addition we presented on nidcap and attachment development in the premature baby within the nicu at the last nidcap trainers meeting. nidcap training centers from around the world 2007 vol. 1 no. 2 “we cannot create observers by saying ‘observe,’ but by giving them the power and the means for this observation and these means are procured through education of the senses.” margaret mead, 1901-1978 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. the official newsletter of nidcap® federation international developmental observer table of contents nidcap training centers from around the world .................................................1 message from the nfi president ...........3 brain development and the expression of human consciousness ......................5 nidcap profile ...........................................7 family voices ..............................................8 supporting families .................................10 nidcap reflections ................................11 nfi training developments ...................12 current developmental research ........13 developmental resources ....................15 letters to the editors ..............................17 working together in south america, graciela basso (neonatologist), stella granatto (speech therapist), marcela castellanos (neonatologist) � • �007 • developmental observer for over a year we have been working on a second phase in our research: the evaluation of developmental care with babies in disadvantageous conditions. this work is being done with the support of the argentinean pediatrics society, and the progress on it will be shared this year at the 18th annual nidcap trainers meeting in combrit, france, september 29 october 2, 2007. one of our greatest satisfactions is receiving the parents’ feedback and seeing how they contribute in the creation of parent groups. the parents and families are always ready and willing to help which keeps us learning. we have also established a number of permanent activities as part of our discharge process, including: 1) home visits; 2) coordination of interactive working groups after medical discharge; and 3) meetings for continuous evaluation with the follow-up team that contributes to our ability to improve communication and satisfaction among the families and all the team members. we believe that supporting parents as the primary nurturers and caregivers of their baby beginning in the first moments after birth and once discharged home, supports the developing and evolving relationship between parent(s) and infant. this support is obviously essential for parents that live in disadvantaged socio-economic conditions because it is through this early and strong affective parent-infant bond that parents can support their babies to grow to their optimal potential. dissemination of the nidcap work and developmental care has also been one of our priorities. locally, we are working with public hospitals to help them understand how the nidcap approach supports infants and their families while the infant is undergoing necessary high technological care. the comprehension of the synactive theory helps us to understand not only the behavioral language of the preterm infant, but also family-centered care, including breastfeeding and kangaroo care. these are basic notions that can be applied to disadvantaged environments. we are individually working toward adapting the environment to these possibilities in each one of the newborn and special care units. to further our efforts in training and dissemination of the nidcap work in our country, we have given conferences in many different provinces of argentina: salta, córdoba, san juan, santa fe, mendoza and buenos aires, including congresses and workshops. our training has also taken us outside of argentina. we have crossed the cordillera de los andes and the atlantic ocean to begin providing nidcap training to health care professionals in both chile and spain. in addition, we have also welcomed health care professionals from other countries to work with us for several months to familiarize them with the working dynamics of a nidcap training center. it is with great enthusiasm that the centro latinoamericano nidcap otamendi, wholeheartedly supports and participates in changing the future for infants in intensive care here in the most austral region and beyond. —graciela basso, md, phd references: 1. als h, lester bm, tronick ez, brazelton tb. towards a research instrument for the assessment of preterm infants’ behavior. in: fitzgerald he, lester bm, yogman mw, eds. theory and research in behavioral pediatrics. vol 1. new york: plenum press; 1982:35-63. 2. als h, lester bm, tronick ez, brazelton tb. manual for the assessment of preterm infants’ behavior (apib). in: fitzgerald he, lester bm, yogman mw, eds. theory and research in behavioral pediatrics. vol 1. new york: plenum press; 1982:65-132. a semi-annual publication of nidcap federation international © 2007 nidcap federation international. articles from developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org senior editor rodd hedlund, med associate editors deborah buehler, phd gretchen lawhon, rn, phd text editor sandra kosta, ba printed on recycled paper ® nidcap federation international (nfi) contributions we would like to thank all our donors for their generous support of the nfi and its continuing work, including the following: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation developmental observer developmental care in the moment relationships: the importance of feeling and being connected developmental observer • �007 • � one of the perhaps less visible threads of the nidcap journey is the life of my son christopher markoe rivinus duffy. christopher, born fullterm, sustained brain injuries during the delivery process and has taught me the essence and importance of seeing a child, seeing the child’s strengths, while being fully aware of and embracing his disabilities as part of him. seeing him and seeing the world, including myself, with his eyes has opened my own eyes, and continues to make me more aware and conscious. it has shaped my life and career, and has offered me the gift to see infants and parents in a deeper way. christopher informed my decision to study human behavior in greater depths. i learned that intuitive parenting1 must become conscious parenting when the child’s individuality portrays behaviors other than human expectation has prepared us for in the thousands of years of evolution to be good enough parents. i also learned from christopher that each child actively shapes the adults and the environment around him or her, and that the adult, who becomes aware and has the emotional where-with-all to open earlier well-practiced ways, and see the child, becomes the better for it. this mindfulness and the attunement to grow oneself, shape the environment and all interaction to nurture, bring out the best in, and cherish the other person, is the mark of a trusting relationship. children, who are unusual, help us better appreciate the dynamics of all children’s development, and help us understand that all children are unusual, uniquely talented, and individual. we learn that what is good, and perhaps necessary to support the unusual child, is good for all children, and for all persons, and all relationships. bowlby’s volume on attachment2 partly validated my thinking. yet i disagreed that the human newborn infant only keeps the mother close by crying, until at about 5 to 6 weeks. i found it difficult to imagine that as a species, we would survive if no other infant stimulus but crying kept us engaged for the first six weeks. our ancestors likely would have discarded us a long time ago. as it turns out the newborn’s eye opening and eye contact is the great reward that as adults we quite intuitively work and live for.3-5 when that eye contact is hard to come by, when its occurrence, characteristics, or frequency violate the adult’s expectation, the interaction threatens to derail. however, when the parent becomes conscious of the infant’s profile and the intuitive interaction’s difference, the ensuing self-awareness and awareness of the child’s individuality may help the parent right the relationship and interaction. in order to understand these neuro-biologic-social-affective processes more fully, i spent a year rich in experience and learning at the behavior development research unit (bdru) at st. mary’s hospital in london, uk. anthony (toni) ambrose, phd,6, 7 director of the bdru, studied the dynamic parameters of pregnant women’s walking in order to test a gait-simulating moving cradle, in an effort to soothe unusually irritable newborns. genevieve carpenter, phd,8, 9, 10 also at the bdru, identified how very early newborn infants reliably distinguish their mother’s face from another woman’s face. olga maratos11 then a greek doctoral student at the bdru in 1972, now professor of psychology at the university of athens, discovered the newborn’s capacity to imitate specific facial expressions and arm movements of the interacting adult, including sticking out the tongue. andrew meltzoff made famous this finding.12 i had contact with nick blurton-jones, the first human ethologist to my knowledge,13-15 who observed young children’s interactions on the playground. my own research in london focused on the observational study of relationship-based mutual goal sharing of healthy fullterm newborns and their mothers, who experienced rooming-in from birth to 30 days, a new concept at the time. i also serially assessed the infants with the brazelton neonatal behavioral assessment scale.16 i learned of the mutual interplay and shaping of infants’ and parents’ goals as expressed in the infants’ levels of arousal and irritability and the mothers’ efforts to regulate their infants. infants, who were hypersensitive, easily overly aroused, and irritable, tended to have mothers who actively attempted to soothe them; the infants gradually became calmer and the mothers less concerned with soothing activities. infants who were placid, low active and difficult to wake and engage, tended to have mothers, who attempted to stimulate and arouse their infants. these infants gradually took more initiative, and more actively engaged their mothers; the mothers responded to them in increasingly calmer ways.17 in an effort to deepen my knowledge and understanding, i then joined t. berry brazelton at his newly founded (1972) child development unit, at children’s hospital boston. his generous mentorship and brilliant teaching convinced me of the importance of translation of clinical expertise into empirically testable questions. the opportunity to operationalize clinical skill and insight helped me focus my research on the fullterm infant’s strengths and capacities, the openness of the parents18-20 to hear and see, and to seek and accept support as at no other time in their lives. i learned about the infants’ and parents’ striving for connection and relationship from the first moments on. i learned that infants will struggle to connect with the parent, and vice versa, even in the face of an infant’s intrinsic difference,21-25 and in the face of experimentally imposed violation of expectation such as in the still-face mother paradigm.23, 26-29 not least, my growing son christopher helped me understand this striving manifold, and at times at more cost to him than i wished, he had message from the nfi president preparing to see and seeing frank h. duffy, md, christopher m. r. duffy and heidelise als, phd � • �007 • developmental observer to pay. these experiences prepared and motivated me to venture and attempt to see anew, with better skilled eyes, the preterm infant requiring intensive care. in 1975, now at the boston hospital for women, lying-in division, my goal had become to learn to read and understand the language of the preterm infant, to learn and document what the preterm infants experienced, how the nicu experience influenced and shaped and perhaps inadvertently changed and possibly damaged the infant. for the next year or so i observed, wrote, rewrote, and edited repeatedly the basic dictionary of the infants’ communications in the face of various events and circumstances. i realized that the behavioral messages involved various subsystems and that depending on the challenge and/or the immaturity or illness of the infant, even the most basic autonomic system functioning might be overtaxed and become overwhelmed.30 the infant might simply stop. often my own helplessness frightened me, yet the infants’ and the caregivers’ determination in turn assured me that they somehow tried their best to work together at this life too early outside the womb. i felt pressure to translate my observations into a coherent system that would be usable by others. i wanted to articulate the subsystems in their interplay and fluctuating relationship to one another and to the environment and events that occurred with, to, and around the infants, in order to support those who cared for the infants to see them as their collaborators and recognize their goals, determination, and their strengths, as well as their thresholds to stress. the assessment of preterm infants’ behavior31, 32 took shape together with its core, the systems sheet. i sketched and re-sketched the complex sub-systems in interaction, struggled with images and words, and wrote and rewrote what became the synactive theory of development.33 in the effort to see and take seriously the support to the infant in helping the infant achieve his or her own goals, close communication and collaboration became essential with those who cared for the infants in the nicu, and who structured their environments. pat linton thompson, and soon gretchen lawhon, nicu nurses at the time, were the brave pioneers, who first removed the ties that held an infant’s arms and legs in place; bedded an infant on the side; made soft nests for the infant to cuddle and tuck into; covered the infant to feel more secure; and the incubator to shield the infant from the bright lights; assured a comfortable chair for the parents at their infant’s bedside; supported the parents to hold their tiny infant; and assured the neonatologists that all this was not only safe, but also supportive of the infants’ and their parents’ development. all the while, the detailed infant behavioral observations helped us stay true to each individual infant and assured us of the current appropriateness of the modifications and adaptations of care. rita gibes, rn, msn, nicu head-nurse at the newly merged brigham and women’s hospital, quickly recognized the great advantages this approach entailed, and became the first leadership professional to support the individualized developmental approach to care. she was a courageous change agent par excellence and insisted on the first ever installation of individual lights with dimmer switch capacity above each warming table, incubator and crib; an invitation to the parents to be with their infant at all times; and advocated for us and our observations and care modifications. she established the first ever “developmental care clinical nurse specialist” position for gretchen lawhon. in addition, she insisted that the approach required its own name in order for others to adopt it. she coined the acronym “nidcap.” elizabeth “liz” brown, md was painfully familiar with infants who struggled to breathe and to eat; who did not sleep, had trouble gaining weight, vomited often, and arched their backs all the time; infants with retracted shoulders, wideeyed panicked facial expressions, and extended limbs. she cared for them in the nicu and after nicu discharge in the “bpd (bronchopulmonary dysplasia) clinic.” liz was the first neonatologist who expressed her hopes that nidcap would improve these infants’ quality of life and perhaps reduce the severity of their lung disease. together we wrote the first grant application to the h. p. hood foundation in order to test foremost the safety, and perhaps even the efficacy of the nidcap approach to care. this first small nidcap study, published in pediatrics in 1986,34 had very encouraging results, and fueled our courage to continue to pursue this individualized approach and learn more about it, how to teach it, and how to make it systems effective. around the same time, christopher, now a young man, prompted my husband frank duffy and me to find an environment and life setting that built on similarly synactive principles as did the nicu work. after heart breaking searching, visits, and experiences at the traditional adult environments for persons with disabilities, we miraculously found camphill village copake, an anthroposophical village, based on the principles of rudolf steiner, (1861-1925) an austrian philosopher, who mainly worked and lived in germany. his conceptualizations also underlie the waldorf schools. he inspired karl könig (1902-1964), the austrian pediatrician and specialist in learning and developmental disabilities, who then founded the camphill movement, an international movement of therapeutic “intentional” communities for those with special needs or disabilities, where all may thrive, as they live and work together. just as in the nidcap work, the camphill social and relationship-based fabric, and work and life environments aim to bring out, liberate, develop, and cultivate the competence, creativity, fulfillment, and mutual caring in every person, no matter their talent. while ending this essay, i continue to learn from christopher, from my husband, all those who make camphill the special place it is, from those engaged in the nidcap work and world with me, and from all the infants and families and the professionals who care for them. we are all connected; we mutually support, teach, learn from, and enrich one another. to be continued. heidelise als, phd references may be found on page 19 since the advent of neonatology, clinical assessments of brain development in the newborn are mostly based on somatomotor development at birth, with almost complete disregard for sensory, cognitive, emotional, or other regulatory functions in development. across the mammalian species, developmental comparisons1 show that more than two months before birth, the human brain is at the developmental stage of the newborn macaque, a species considered quite precocious at birth.2 most clinicians may not realize that human newborns are capable of complex processing, including abstract processing of the shapes or objects, or the properties of numbers, implying relatively advanced prenatal development of sensory processing. arguments against the possibility of fetal/neonatal pain have been based on immaturity of cortical neurons and the thala-mocortical connections conveying inputs from the periphery.3, 4 immaturity or suppression of cortical neurons are not, by themselves, sufficient to preclude the occurrence of early pain. developmental roles for the subplate zone located below the cortex the subplate zone of the forebrain, which later separates to provide the interstitial neurons in the subcortical white matter and neurons in cortical layer i, forms a complex synaptic network of neurons and glia. within this network synaptic communication occurs via release of glutamate, gaba, acetylcholine, neuropeptides, and calcium-binding proteins. the somatosensory subplate zone receives distinct inputs from the thalamus and the neocortex5 and reaches four times the width of the somatosensory cortex in the human fetus (and twice the width in the monkey). subplate zone neurons can stimulate excitatory n-methyl d-aspartate (nmda) or peptidergic activity in the cortex, influencing the development of fetal cortical circuits.6, 7 differentiation of the subplate neurons at 17–25 weeks’ gestation produces five cellular subtypes whose distinct dendritic and axonal patterns correspond to different functional roles in development. changes in the subplate zone are evident in the lamination patterns of the developing human fetal cerebral cortex.8, 9 limited understanding of their role has led scientists to label subplate neurons in deep cortical layers as “vestigial remnants,” simply because other subplate neurons undergo programmed cell death during development. huge numbers of spinal cord neurons also die during development, with no suggestions those remaining neurons are vestigial. maintaining “vestigial” neurons would be metabolically expensive and unlikely to occur in evolution. on the other hand, subplate neurons are optimally positioned for efficient communication, with sparse connections across time and space and rich inputs from cortical and thalamic sources. they play essential roles in the formation of ocular dominance columns, sensory receptive fields, or cortical gyri. thus, they are particularly vulnerable to the preterm injuries that produce cognitive and sensory deficits during later childhood. selected apoptosis of subplate cells in superficial layers leaves behind wellconnected subplate cells in deep cortical layers, thereby forming the earliest cortical circuits. their connectivity give rise to the behaviorally relevant component of evoked responses termed “n1,” which represent sensory perception in primates and is initiated in cortical layer i.10 these cortical connections, initially formed in the subplate zone, are essential components of the cognitive processing by which sensory information is primed, guided, and interpreted.10, 11 does consciousness depend solely on the cerebral cortex? as the starting point for the observation of all natural phenomena, consciousness is required to prove the existence of anything, but there can be no proof of consciousness.12 more than 50 years ago, wilder penfield (a neurosurgeon) and herbert jasper (a physiologist) noted that large cortical excisions, even as radical as hemispherectomy, could be made while their conscious, awake patients continued to converse with them. despite the extent of this surgery, patients showed no evidence for an impairment of consciousness.13 surgical removal of cerebral cortex containing epileptic foci deprived these patients of stored information or discriminative capacities, but did not affect consciousness itself. based on observations from more than 750 patients, penfield and jasper proposed that “the highest integrative functions of the brain are not completed at the cortical level, but in a system of highly convergent subcortical structures supplying the key mechanism of consciousness.”13 various cortical areas were stimulated electrically, brain development and the expression of human consciousness k. j. s. anand, mbbs, d.phil., faap, fccm, frcpch developmental observer • �007 • � which revealed that the reflective, conscious capacities of these patients proceeded in parallel with the artificially stimulated effects such as elaborate fantasies or dream-like experiences, suggesting that the observing function of consciousness is separable from its cortical contents.13 in patients with stroke or head injury, lesions in the reticular activating system, but not the cortex, lead to loss of consciousness. during petite mal or “absence” epilepsy, a brief lapse of consciousness occurs associated with a distinctive electroencephalogram (eeg) pattern of bilaterally synchronous spike and wave discharges.the bilateral discharges show a symmetrical coincidence of even the very first abnormal eeg spike, which is inconsistent with epileptic spread across interhemispheric pathways. instead, they may result from paroxysmal discharges in the midline subcortical structures, which are radially and symmetrically connected with both cerebral hemispheres. this eeg pattern cannot be produced by experimental stimulation of cortical areas, but is evoked by stimulation of the midline thalamus.14 the nobel laureate edelman and colleagues also discussed the criteria for consciousness in animal species, concluding that the mechanisms for consciousness are not exclusively cortical.15-17 infants and children with hydranencephaly, a brain disorder with complete absence of the cerebral hemispheres, provide further clinical evidence for conscious perception mediated by subcortical centers.18, 19 these children clearly possess a discriminative awareness of their environment, despite a total or neartotal absence of the cortex. they can distinguish familiar from unfamiliar people (the same for their environment) and are capable of social interaction, visual orienting, musical preferences, appropriate affective responses, and associative learning.20 a subcortical system comprising the basal ganglia, medial and midline thalamic nuclei, substantia nigra, ventral tegmental area, superior colliculi, midbrain, and pontine reticular formation mediates the organization of consciousness.21 in the words of penfield and jasper, this system does not function “by itself alone, independent of the cortex,” but “by means of employment of various cortical areas.”13 the fact that the corpus callosum or other forebrain commissures are not required for high levels of cognitive function,22 provides supportive evidence for the subcortical integration of both cerebral hemispheres, symmetrically and radially connected to this midline system. therefore, multiple lines of evidence corroborate that the key mechanisms of human consciousness or conscious sensory perception may not depend on cortical activity. consistent with this evidence, the responses to painful stimulation of children with hydranencephaly are purposeful, coordinated, and similar to those of intact children.20 preterm neonates or adolescents with severe cortical parenchymal injury mount biobehavioral responses to pain that are indistinguishable from those of normal controls. whether consciousness is required for sensory perception has also been questioned by recent studies of adult patients in a persistent vegetative state.23, 24 recent reviews have a faulty scientific rationale several authors have recently tried to deny or discount the occurrence of neonatal or fetal pain. a closer examination of these papers reveals three major flaws in their scientific rationale, on the basis of which they have ruled out the occurrence of neonatal/fetal pain.3, 4, 25 first of all, they represent pain perception as a hard-wired system, passively transmitting nociceptive impulses until “perception” occurs in the somatosensory cortex.3, 25 in contrast, pain research over the past 40 years, beginning with the gate control theory of pain and extended through vast amounts of clinical and experimental data, has long outgrown this cartesian view of pain. these data assert that nociceptive signaling in early development depends not only on the context and characteristics of the stimulus, but also on the behavioral state at that time. fetuses undergoing intrauterine invasive procedures were reported to manifest coordinated behavioral responses trying to avoid tissue injury.26, 27 secondly, these reviewers incorrectly assume that pain perception during fetal or neonatal life must engage the same structures as those used by adults. immature development of these areas is then used to support the argument that neonates cannot feel pain until late gestation. voluminous clinical and experimental research shows that the fetus or neonate is not a “little adult,” that the structures and mechanisms used for pain processing in early development are unique and very different from those of adults, and that many of these structures and mechanisms are not maintained beyond specific periods of early development. the immature pain system thus uses the neural elements available during each stage of development to carry out its signaling role. third, such reviews presuppose that cortical activation is necessary for pain perception.3, 4, 25 based upon this assumption, the lack of evidence for pain-specific thalamocortical connections thus supports their contention against fetal/neonatal pain. this line of reasoning, however, ignores clinical data cited above that ablation or stimulation of the primary somatosensory cortex does not alter pain perception in adults, whereas thalamic ablation or stimulation does. the thalamus plays a pivotal role in regulating the spinal-brainstem-spinal loops that mediate context-dependent descending facilitation or inhibition, coordinated via the key mechanisms of consciousness. in addition, recent studies have noted robust activation of the somatosensory cortex in preterm neonates exposed to tactile or painful stimuli, modulated by gestational maturity, postnatal age, sex, laterality and sleep/wake states.28, 29 acknowledgments and references may be found on page 19 � • �007 • developmental observer developmental observer • �007 • 7 laurie has been fascinated by the growth of the nidcap program in the united states as well as throughout the world. she realized the significance of cultural differences early in her career as she reflects: “one of my first inklings of the challenges for newborn intensive care units (nicus), was when a nurse, embarking on nidcap training in boston, asked me how it was that an occupational therapist came to be in a nicu. this was apparently an unheard of role for an occupational therapist in her country, which completely caught me by surprise.” occupational therapy as a profession developed in the united states early in the twentieth century out of the discipline of psychiatry. many of the early leaders and educators came from the disciplines of nursing and social work. when laurie enrolled in the boston school of occupational therapy at tufts university in boston, close to half of the therapists employed were working in the field of mental health which is where laurie had intended to work. however, as laurie reports: “in a few short years, with the dramatic reductions in funding for mental health, and the disbanding of mental health institutions, those jobs disappeared and the majority of positions shifted to physical medicine and rehabilitation. nevertheless, i have maintained an interest and orientation towards mental health perspectives that have contributed to the fit between nidcap and my professional training.” as an occupational therapist, laurie began working at a day program for children and adults with severe physical and cognitive disabilities in bangor, maine. she quickly became frustrated by the lack of a rationale or connection between what she was taught and what she was expected to do as a therapist. “i thought if only i could understand the brain better, i could be a better therapist!” so after working five years in bangor, maine, laurie returned to graduate school at emory university in atlanta, georgia, and received her ms degree in anatomy and cell biology. laurie reports: “it didn’t take long for me to realize how little was known about brain plasticity, and that the theories i was trying to apply had very little scientific support.” after finishing her masters degree she enrolled in the doctoral program at boston university designed for pediatric occupational and physical therapists. while in boston, working clinically in early intervention, laurie had the opportunity to attend a lecture at wheelock college given by a gifted educator by the name of jean cole. “jean at that time was a trainer of brazelton’s newborn behavioral assessment scale and was working for project welcome at wheelock college. her enthusiasm and presentation of the synactive theory struck a cord with me and i immediately recognized that the theory’s complexity, yet relative simplicity, was a perfect fit for many of the pieces that i had been struggling with throughout my professional career.” shortly after hearing jean cole speak, laurie and a social worker went on a home visit to assess an infant recently discharged from a hospital nicu. as the social worker was interacting with the infant’s mother, laurie was attempting to engage the baby in simple social interaction. “the baby, however, became fussy and began to flail his arms and legs. reflecting upon what jean had spoken about in her lecture, i simply tucked the baby’s arms and legs in, up close to his body, and supported this position with my hands. to my astonishment the baby began to calm and looked briefly into my face. it was during this ‘aha!’ moment that i realized the potential for applying the synactive theory clinically in my work with very young and sick infants.” jean cole had encouraged laurie to contact dr. heidelise als, and from there, a small pre-dissertation project turned into a ten year doctoral project which completely changed her understanding of infants and herself. laurie reflects that “learning to administer and score the assessment of preterm infant’s behavior (apib) gave me a level of appreciation of infants that was a perfect fit with my occupational therapy background. i found the synactive theory to be the theoretical ‘glue’ that brought all the pieces together into a cohesive whole for me.” over the course of her doctoral project, laurie studied the behavioral repertoire of the healthy yet prematurely born infant.* the apib was used 10-14 days after birth in a cross-sectional comparison of forty-two healthy newborn infants: 16 fullterm infants (gestational age at birth (ga) = 40 weeks), 13 close to fullterm infants (ga = 37 weeks) and 13 preterm infants (ga= 34 weeks). as laurie reports: “in spite of studying very healthy infants we found group differences laurie mouradian, scd, otr/l this column has been designed to highlight individuals who have been involved with nidcap and to share their experiences. dr. laurie mouradian has facilitated the emerging competence of infants, families, and professionals in newborn intensive care for over twenty-five years. she is the program director of the oklahoma infant transition program, and co-director of the sooner nidcap training center. in addition, dr. mouradian is clinical associate professor of research, department of pediatrics, college of medicine, university of oklahoma health sciences center (ouhsc), oklahoma city, oklahoma. continued on page 14 n i d c a p p r o f i l e dorothy vittner, rn, msnc x x x x x x x � • �007 • developmental observer� • �007 • developmental observer sarah and her husband, tom, have three sons. their youngest, truman, was born at 26 weeks and 6 days post conception. during truman’s 16 and a half week hospitalization, he experienced a number of medical complications, including a perforated bowel leading to an illeostomy. now truman is 21 months old (18 months from his due date) and “is happy, loves to be around his family, adores his [two older] brothers and his dog tucker!” the following are excerpts from a telephone interview with sarah on her reflections of her experiences in the nicu at st. luke’s hospital in boise, idaho. please share your experience in the nicu. i had never experienced anything like that before. it was pretty scary while at the same time the nursery staff made you feel pretty comfortable. i was there every day. i didn’t take a day off. truman was in the nicu for 115 days. it was very scary at first. the first couple of months it was touch and go. he got pretty sick. he had a perforated bowel which caused the fluid to leak out into his stomach and he had to have an illeostomy which is partial removal of the small intestine. so he had an illeostomy bag for six months. but every day, we’d come in and i’d take our middle child, carson, in with me and we would just go and hang out and read to him. i’d try to do as much as i could, as much as i was allowed to do with truman. i was there all the time. [during that time,] it was pretty difficult to decide where i needed to be because no one wants to leave their infant in the hospital and go about their daily life. it was hard to find the balance of what the two older boys needed from me and what truman needed from me. how did you care for truman in the nursery? in the first few weeks, we could put our hands on truman to calm him down. basically we kind of just sat in there with truman. we weren’t able to do a whole lot because he was so sick and so little. mostly just our hands comforting him. and after a few weeks we were able to do kangaroo care, which was very helpful for all of us. it was wonderful for all three of us. we would hang out together. [as he got older,] i would change his diaper, take his temperature. i would change his bandages from his bag for his illeostomy. for a while he was fed by a tube, just the formula out of a syringe. so i would hold that. anything that i could. give him a bath. help make his bed. read to him a lot. i thought that truman just needed the presence of me being there. to do anything that i can to help. just having me be there. how did you know when truman’s needs were met in the nursery? his overall presence would just be like he was very comfortable and happy. you could see it in his face and feel it in his body. please describe what parts of the nicu experience worked well for you and your family. mostly, [the nursery staff ] letting us do everything that we could. that we were allowed to be in there and just hang out in the room with truman was the most important to us. everyone communicated very well with us. they showed us and talked about what they were doing. i have a friend who is a social worker in the unit and i felt very comfortable in talking to her and expressing my feelings. truman had four primary nurses that were wonderful. we felt very comfortable with them and in expressing how we felt about things and what we would have liked to have seen done. they went to battle for us quite a few times. and just knowing that if we were gone that the doctors and nurses would call us immediately. what parts of the nicu experience were the most difficult for you? the most difficult part would be when we had to leave truman. [also] the changing of shifts of the nurses was hard on us. with him being in there so long, he had so many different people working on him and with him. there were just a lot of nurses and a constant changing of staff. sarah tueller fa m i ly v o i c e s as interviewed by deborah buehler, phd truman (center) with his parents, sarah and tom, and his older brothers, carson and boston developmental observer • �007 • � developmental observer • �007 • � what suggestions for changes might you recommend for the nicu? for the “long term babies,” having a couple primary nurses is very important and keeping the babies that are there in the same room. truman was going to be moved a couple of times and that was pretty stressful on all of us. he would have completely changed his whole team. keeping the babies in their same rooms and not transferring them for staffing purposes. it is more about what those babies need and consistency with the nursing and the doctors. there were quite a few nurses that weren’t very patient with us as far as learning new things. to them they do [caregiving procedures] every single day but with us it was completely new. just being a little bit more patient and understanding the feeling of what it would feel like if it was them in our situation. some [nurses] were super busy and ready to get going and then others were willing to take the time to teach you and explain things. one thing that got really hard was when there were too many babies in the room. it got noisy. it just seemed like the nurses were busy. which i’m sure that they were with taking care of all of the other babies that were in their room. another thing that was concerning, the nurses would leave the room to go on lunch break and then the nurses in the other room would watch your children too. that was kind of hard to see. please share the experience that you had with your nursery’s developmental specialist. julie [the developmental specialist] came in to observe truman. she was training to write these little stories, like an hour long worth of observation, about the surroundings, the environment and how it was in the room for the babies. just a complete observation and wrote it down in a story. she asked if she could do that with truman and i was completely open with it. i asked for copies. she wrote a story about once every three weeks. i have every observation that she has written in his scrap book. [reading these observations] felt like i was right in the room. i was like a person standing in there observing everything and it was down to whether the curtain was open or closed. how truman appeared to be reacting to things. [how he responded when] the machines were beeping. how comfortable he looked. what position he was in. what he might have been wearing or not wearing when she came in. whether there were other babies in the room [or] whether we were there. it was pretty neat. it felt like it was coming out of my eyes. what she observed he was getting agitated with and what might help him to feel more comfortable. [soothing him could be] as simple as placing your hands on him or just sitting quietly next to him and talking to him or reading. but mainly [he seemed comforted by] just touching him to have him feel our comfort. [the observations] were beautiful. people who go through something like that with their children block a lot of it out because it is pretty difficult. but just being able to read through that later on and remember what it was like is comforting. i’ve had times where i’ve gone back and read through the stories. i have forgotten things that she has written. it brings it all back to my memory. it’s kind of an experience you don’t want to forget but at the same time you don’t want to remember having to see your children go through something like that. i think that it would be a phenomenal thing for any parent who had to go through something like this to help remember the experience. we were very lucky to have julie do that for us. she will be a person that we will never forget through this whole experience. we actually learned a lot about her personally and that helps to. it makes you feel like you are not just a patient, you have a purpose. truman’s days are filled with the joys of being a toddler playing with his family, especially with his big brothers and dog. in and around these family rhythms, he is being regularly followed by a number of health care providers, some weekly, some every other week, including a: kidney specialist, eye doctor, neurologist, orthopedic surgeon, developmental pediatrician, pediatrician, developmental therapist, occupational therapist, speech therapist, physical therapist, and vision therapist. as truman continues to grow, sarah described her wishes for him: i honestly hope for him to be able to speak and to be able to get around on his own. right now, as far as we know, he will never walk. i just want him to become as independent as he can. and to be happy. sarah’s days are filled with parenting. she described staying connected with the nicu through her social worker friend and the nursery staff that she sees during hospital follow-up appointments for truman. these touchpoints have led her to work as a volunteer giving support to parents currently in the nicu. as sarah reports: i help with the parent support group. every other week i go in for an hour and i put in a movie for parents to come in and watch about being a parent in the nicu and pop some popcorn and be there to listen. it’s interesting. it was probably a year and a half after truman had been out [of the hospital] that i started going back. the smells brought back memories. it has been helpful for me to see other parents, to help them and to just listen. the essential parent joy v. browne, phd, rn how often when parents come to their infant’s bedside do we say softly and with a big smile “oh, how wonderful that you are here! your baby is ready to hear your voice, feel your gentle hands, and smell your unique odor. she knows you best, you know! she needs you as a parent more than anything else today”? better yet, do we believe it so that we can fully support the parent’s role in regulation of the baby’s autonomic, motor, state and self-regulatory systems? in our important role of providing the best medical, nursing and therapy support possible, we sometimes don’t recognize the essential regulatory aspects of the parent’s intimate presence with their baby. we also don’t often recognize the importance of the baby’s regulatory effect on the mother’s physical and psychological recovery from an often traumatic birth experience. it goes both ways, and if we believe winnicott’s saying that “there is no such thing as a baby…there is only the baby and the other,” we would practice parent/baby care in all its challenging aspects. what does the baby get from close, intimate, uninterrupted contact with the mother and father? autonomic system regulation, such as more stable temperature, oxygen saturations, and respiratory and heart rate. babies are also typically more “relaxed” and are held in a more flexed posture than when in the incubator or bed. they also sleep more deeply, have opportunities for arousal and looking en face with the mother or father, and have less irritability. babies held in intimate contact have readily available regulatory supports from the mother’s body and support of their own efforts to grasp upon their own clothing or body, push with their feet against a supporting surface, and mouth and/or suck upon their own hand or pacifier. what does the mother get from close, intimate, uninterrupted contact with the baby? physiologic regulation by secretion of oxytocin, production of higher chest temperatures, reduced heart and respiratory rates, and increased milk production. in addition, mothers and fathers are calmer, less stressed and show more attachment behaviors with their infant. developmental goals in the hospital newborn intensive care unit (nicu) that use the nidcap model include support of the infant’s autonomic, motor, state and self-regulatory organization. how better to provide this support than by insuring that the most familiar, consistent, and physiologically essential interventions are readily accessible to the infant. for many nicus, an emphasis on this practice is selfevident, and policies and protocols to support intimate interactions between parents and babies are paramount. however, in many other nicus, what we think we are providing fall short of what we envision. several practices send subtle (and sometimes not so subtle) signals that parents are not on the top of the list to provide the essential regulation that their infant needs. for example: visiting. times when parents are restricted from being with their infants indicate that there is an unwritten hierarchy in how we view the role of parents in nicus. how often do we refer to parents as “visitors” rather than essential partners in their baby’s care? bathing. is bathing of the baby an essential parent role or a nursing task? bathing is one of the most intimate and rewarding interactions that parents and babies will have. reserving our need for giving the baby a bath in promotion of the parent’s need for that intimate and regulatory opportunity is essential. fragility. infants may be too fragile or have too many tenuous lines, tubes, etc. to be moved from the bed to the parent’s arms. however, there is typically a large range of what we consider “too fragile” from one shift and one staff member to another. studies have shown that even the smallest, sickest infants can be held with few or no adverse consequences, in fact, holding can be extremely beneficial. the most confusing aspect for parents is when one staff member says “yes he’s too fragile” and another says “no, he’s not too fragile to be held.” sleep protection. parents come to the nicu when they are able to, not when they know their baby has just gotten to sleep, however it may seem to the busy nurse at the bedside. for a variety of reasons, parents need to touch, rouse and interact with their babies when they are with them. their presence at the bedside should be a time of opportunity for the parent to provide essential regulation for the baby, and the staff member to provide essential regulation of the parent to know just how to interact with their fragile infant. staff assignments. as staff assignments become more difficult and busy, the role of parents in regulating their infant’s autonomic, this column will often feature an invited essay by a nidcap professional who has given special attention to family support in his or her research or clinical practice. for this issue, our guest shares ideas generated by her many years of work in the icn in both capacities. joy v. browne, phd, rn, is associate professor of pediatrics and psychiatry and director of the colorado nidcap and first training centers at the university of colorado at denver and health sciences center, affiliated with the children’s hospital of denver. she is also director of the fragile infant feeding institute, a nidcap master trainer, and a licensed psychologist. continued on page 18 10 • �007 • developmental observer s u p p o r t i n g fa m i l i e s melissa r. johnson, phd developmental observer • �007 • 11 each newborn intensive care unit’s unique practices, culture, and concerns shape the way developmental care practices are integrated. here, monique flierman, msc, pt and monique oude reimer, rn, developmental specialists in rotterdam, the netherlands, share how their first developmental practice change project resulted from their experience doing nidcap observations. the sophia children’s hospital is part of the erasmus medical center and has a level iii nicu consisting of three rooms with eight to ten bedspaces each. babies who no longer require intensive care are transferred to outlying hospitals. we implemented nidcap in 2003. as we practiced observing babies, we often saw their discomfort during the daily change of the nasal cpap tube. the nidcap group decided that this procedure should only be done while properly supporting the baby. one nurse would support the baby while a second nurse changed the cpap tube. to prepare for this practice change, we educated the nurses. we explained the signals of the babies and the importance of supporting the baby during stressful procedures, and affirmed that this two person support was now mandatory. for the first three weeks the nidcap team was available to our colleagues during cpap tube changing. we often heard remarks such as: “i can do it on my own” and “it takes more time to do it with two people.” however, step by step, people became more positive: “i can see it makes the procedure easier for the baby and for me as a nurse.” it was important for them to see that the baby stayed more comfortable with this support. each year we planned for and gradually implemented new items dealing with the environment, parents, caregiving and behavioral observations. every three months new items were introduced and previous items evaluated. we communicated the schedule and results with a poster in the coffee room. as we worked intensively with parents to help them support their baby, the nurses began to understand that the parents knew more about their baby then they did. we saw that the nurses were ready for more in-depth education and we designed a clinic with both practical and theoretical information. we videotaped each nurse while she cared for a baby. this was followed by a private one-on-one session with the developmental specialist and the nurse. the nurse watched the video and reflected on what she saw. the developmental specialist discussed brain development and nidcap and also practiced caregiving with a doll. then the nurse cared for the same baby applying the newly acquired knowledge and skills, supported by the developmental specialist. we individualized this teaching we individualized this teaching based upon a questionnaire that each nurse had previously filled out. these clinics proved to be highly effective in promoting developmental care in our unit. a nurse shared her thoughts with us: i found the education about the brain development very impressive. i realized how vulnerable our patient population is. i also thought: “what did i do wrong during the last 18 years without knowing i did it wrong. i am fortunate that i have gotten information on how to do caregiving well. i will work slower and will take time for the child. i am able to make a good supportive nest. for parents, i do have the knowledge now to support them asfor parents, i do have the knowledge now to support them as they come to be with their baby and learn more about her each day. the support of our management team, the sophia nidcap training center, and our nidcap trainer, has been essential in this implementation process, and has supported us to individualize our care for the babies and their parents. developmental observer • �007 • 11 n i d c a p r e f l e c t i o n s monique flierman (left) and monique oude reimer, developmental specialists at the sophia children’s hospital in the netherlands jean powlesland, rn, ms 1� • �007 • developmental observer according to the unabridged dictionary. com, a qat is a shrub in the middle east and africa whose leaves are chewed like tobacco or used to make tea and has the effect of a euphoric stimulant. within the nidcap federation, qat is the acronym for our quality assurance training policies and there are now fifteen that have been delineated. while this work is very stimulating and has been known to produce euphoria after long nidcap training days, there is little else of the nfi qats similar to the middle eastern shrub. across the policies of the nfi qats, there are a number of common themes throughout that clearly identify the eligibility, application process, training requirements and importance of quality control. with carefully evaluated exceptions, all professionals involved in nidcap and/or apib training should be associated with or on staff of a newborn intensive care unit or special care nursery. it is essential that these professionals have communicated with and gained the support of the multidisciplinary administration of their nursery. this reflects the evolution of the nidcap training process from its historical beginnings of isolated individuals being trained to the incorporation of the unit and hospital system embracing change in clinical practice. the first two qats (1 & 2) address those professionals seeking certification as nidcap and apib professionals. the application process to the respective nidcap or apib trainer/center is described as having a site assessment, 2-3 year plan including financial aspects, and the trainees’ self assessments. the process of securing the commitment of a specific trainer is an important aspect of nidcap and apib training. the training requirements, including the preparatory work, are listed as well as the training process. qats 3 and 4 involve professionals seeking nidcap and apib trainer certification. at this level the individual(s) and nursery leadership team either contact a nidcap or apib master trainer and/ or seek guidance from the nfi quality assurance committee to identify an appropriate master trainer who may be available. this process often involves the formal application to become a nidcap training center. once the nfi quality assurance committee has reviewed all the documents of the application a formal presentation to the board of directors is made and voted upon for approval. this thorough application process ensures the commitment necessary for the typical five year plan toward training center development. naturally for a nidcap or apib professional to become a trainer he/she will present evidence of very recent certification or obtain recertification. the definition and requirements for being certified as a senior nidcap or apib trainer are explained in qats 5 and 6. the formal application is made to the chair of the nfi quality assurance committee and will show evidence of the nursery leadership team’s commitment to the nidcap/apib professional in addition to their meeting the requirements as clearly stated. qat 7 clarifies the rules that govern the relationship among nidcap trainers, nidcap training center development and master trainer development. this relationship often involves the simultaneous work of center development and a nidcap trainer working toward master trainer status. this policy assures an effective and smooth process for both. the next phase in the evolution and experience of a senior nidcap or apib trainer wanting to move to a more challenging level of training is to apply and work through the process of certification as a nidcap or apib master trainer which is outlined in qats 8 and 9. naturally there is someone with further experience who can mentor and guide those who choose to become master trainers and that level of trainer is a senior nidcap or apib master trainer for whom the qualifications are delineated in qats 10 and 11. currently we have one professional who has attained senior nidcap master trainer and senior apib master trainer with a few colleagues who are striving to achieve this level of training. the remaining four qats, 12-15 have been written to clarify the specific requirements for nidcap and apib training centers as well as those centers who qualify for certification as nidcap or apib master training centers. the quality assurance training policies, known as qats, are readily available to all members of the nidcap federation and are accessible on the nidcap website in the member services area. they were discussed and made available at the 17th annual nidcap trainers meeting held in sun valley, idaho (october 2006). if you have not already done so, please take the time to review these important documents and address any questions to the quality assurance committee, chaired by dr. als. what does qat mean and have you read the qats yet? n f i t r a i n i n g d e v e l o p m e n t s gretchen lawhon, rn, phd qat shrubs in yemen 1� • �007 • developmental observer developmental observer • �007 • 1� growing evidence that demonstrates the benefits of nidcap intervention has led to increased efforts towards unit implementation. the following recent publications focus on evaluating professional and family caregivers’ perceptions concerning nidcap-based care, the nidcap implementation process, and the effect of education on parental understanding of infant behavior. staff perceptions van der pal sm, maguire cm, le cessie s, veen s, maarten wit j, walther fj, bruil j. staff opinions regarding the newborn individualized developmental care and assessment program (nidcap). early human development. 2007; 83:425-432. nidcap implementation is challenging, time consuming and affected by staff attitudes. multidisciplinary staff from two nicus in the netherlands were surveyed regarding nidcap implementation and impact. surveys were distributed two years after the introduction of nidcap, which in turn, occurred two years after the introduction of general positioning and environmental changes. of the 168 multidisciplinary staff surveyed, 124 responded (74% return). the majority viewed nidcap as effective and used nidcap-based care most of the time, yet many reported that caregiving required more time. the perception of personal control influenced the use of nidcap more than the intention to use nidcap. physicians were less positive regarding effectiveness and reported less control over the use of nidcap than did nurses. the authors conclude that staff generally view nidcap as positive and recommend ongoing assessment of staff feedback, providing classroom and bedside guided learning, establishing multidisciplinary teams, supporting staff needs when introducing environmental changes, and exploring time-saving options such as summarizing key nidcap recommendations for quick staff review following the completion of nidcap behavioral observations. hendricks-munoz kd, prendergast cc. barriers to provision of developmental care in the neonatal intensive care unit: neonatal nursing perceptions. american journal of perinatology. 2007; 24(2):71-77. nurses’ views regarding developmental care effect individual and unit-wide implementation. one hundred seventy nicu nurses from 24 hospitals in the northeastern united states were asked to complete a 12-item survey of perceptions regarding developmental care implementation with 146 responding (86% return). while 93% of respondents identified developmental care as essential for high-risk infants, only 14% perceived implementation as optimal at their facility. multidisciplinary planning meetings were reported to be an implementation strategy by 76% of the nurses working in units perceived as having a high level of developmental care. in contrast, such meetings were reported by only 33% of nurses who believed developmental care to be suboptimal in their units. of those nurses from units with meetings and/or developmental care leaders, 38% identified staff nurses or physicians as the primary barriers to implementation, compared with 90% of nurses working in units without such support, a highly significant difference. additionally, nurses from units with multidisciplinary meetings were more satisfied with unit and facility leadership and their facility overall.the authors conclude that use of a multidisciplinary planning strategy may improve communication and reduce the perception of barriers and thus enhance developmental care implementation. parental knowledge and perceptions maguire cm, bruil j, wit jm, walther fj. reading preterm infants’ behavioral cues: an intervention study with parents of premature infants born < 32 weeks. early human development. 2007; 83:419-424. parental knowledge of preterm behavior may enhance parent-infant interaction and caregiving confidence. a time lag study conducted over eight months at a tertiary nicu in the netherlands evaluated the effect of an education program on knowledge and confidence. education addressing preterm infant behavior was offered to ten sets of parents of infants born earlier than 32 weeks gestation. four sessions were provided over a two-week period during the second and third weeks after birth. intervention group mothers demonstrated significantly improved knowledge of infant behavior and reported significantly higher nursing support levels than did mothers in the control group. intervention group mothers and fathers showed improved caregiving confidence that did not reach statistical significance. parental feedback included the need for multidisciplinary understanding of infant behavior, the value of developmental specialists and infant observations, and the importance of establishing multidisciplinary teams that include parents of former nicu patients. the authors conclude the intervention is effective in increasing knowledge of infant behavior but question the sensitivity of the scale to adequately measure confidence in parents of high-risk infants. wielenga jm, smit bj, unk lka. how satisfied are parents supported by nurses with the nidcap model of care for their preterm infant? journal of nursing care quality. 2006; 21(1):41-48. customer satisfaction is increasingly valued as a measurement of care quality. a time lag study conducted at a tertiary nicu in the netherlands evaluated the effect of nidcap on parent satisfaction with caregiving and nursing support. control group data was initially collected for infants receiving standard unit care. following a 6-month period of staff education, intervention group infants received nidcap-based care including serial behavioral observations. parents of 49 (24 control, 25 intervention) infants born earlier than 30 weeks c u r r e n t d e v e l o p m e n ta l r e s e a r c h diane ballweg, msn, rnc, ccns 1� • �007 • developmental observer gestation were asked to complete two questionnaires. response rates were 96% for control and 92% for intervention group parents. overall parents were significantly more satisfied with nidcap-based care. scores of nurse support were higher for the intervention group but did not reach statistical significance. the authors note that control group scores were high to begin with, possibly due to parents of control group infants being unaware that care and support could be different. ratings of support and satisfaction were highly correlated in both groups. the authors conclude that assessing parent satisfaction is a necessary component of quality improvement and that measuring implementation progress should be continuous due to the lengthy process required to achieve culture change. kleberg a, hellström-westas l, widström a-m. mothers’ perception of newborn individualized developmental care and assessment program (nidcap) as compared to conventional care. early human development. 2007; 83:403-411. premature birth disrupts relationships between mother and their infant. twenty mothers of preterm infants at 36 weeks post menstrual age completed a validated questionnaire exploring the effect of nidcap on early relationships. the infants, born at less than 32 weeks gestation, were enrolled in a randomized controlled trial evaluating the medical effects of nidcap care at karolinska hospital, stockholm, sweden. infants in the study group received serial nidcap observations, which were used to guide care. infants in the standard care group received caregiving, feedings, and skin-to-skin holding on a set schedule. mothers of infants receiving nidcap-based care reported feeling significantly closer to their infants than did mothers of infants in the standard care group, regardless of their baby’s gestational age, birth weight, or severity of illness. one of the interesting findings showed that when parents are provided care in the nidcap model these parents reported significantly higher levels of concern despite perceiving their parental role to be better supported by staff. the authors conclude that when parents are provided care in the nidcap model, they may form earlier and stronger relationships with their son or daughter in the nicu, and as a result, may experience greater concern about their infant’s experience in the nicu. on measures of autonomic, motor, state, attention/interaction, and self-regulatory systems as well as on a measure of overall behavioral organization. while full term and 37 week infants were behaviorally more similar to one another than either group was to the 34 week infants, there were important differences even between full term and 37 week infants. we tend to overlook the behavioral vulnerabilities of healthy babies born slightly early and this study demonstrated that even a few weeks of prematurity makes a behavioral difference. this can be important information for parents taking these babies home.” upon receiving her doctoral degree in therapeutic studies at boston university, laurie moved to oklahoma city, oklahoma and assumed the position of associate professor, department of occupational therapy, college of allied health, ouhsc. laurie was enticed by the presence of the sooner nidcap training center under the leadership of martha holmes, msw and roger sheldon, md. after teaching fulltime for a few years she missed the clinical work and accepted a position as an infant developmental specialist for the oklahoma infant transition program (oitp). oitp provides clinical services for the nicu at children’s hospital and is the umbrella organization for the sooner nidcap training center. laurie then embarked on the process to become a nidcap trainer along with her colleague rodd hedlund, med. when martha holmes retired laurie became the program director of oitp and shares responsibilities as co-director for the sooner nidcap training center with dr. roger sheldon who is also the principal investigator and director of oitp. when rodd moved on to other opportunities, laurie hired one of his nidcap trainees, bunny hutson, rn, who had been a bedside nurse for many years in the nicu at children’s hospital. bunny is now a developmental specialist and a nidcap trainer-in-training at oitp. “i am incredibly fortunate to have bunny as a co-regulator and co-facilitator of the nidcap work we are doing in the nicu at children’s hospital and with other units throughout oklahoma and missouri.” laurie continues to teach at the university of oklahoma health sciences center and provides many lectures and nidcap training opportunities within oklahoma and missouri. she has published articles on neurobehavioral development; the integration of neurobehavioral concepts into early intervention; as well as the influence that caregiving practices have on motor functioning for preterm infants. as laurie reflects: “i really cannot express how deeply i appreciate the mentoring and guidance that dr. als has provided over the past twenty years. her insights and perspectives have changed my life in ways i could not have imagined when i first contacted her so many years ago. one of the highlights of my nidcap career was the opportunity to host the nidcap trainers meeting in oklahoma city during the fall of 2004. it allowed me the opportunity to demonstrate to my nidcap colleagues how very much i appreciate being part of such an amazing group of professionals and friends, who are all so dedicated to making the world better for babies and their families.” laurie is a continual learner and has recently enrolled in art therapy classes, something that she was interested in thirty years ago. for fun and refueling, she enjoys swimming and participating in art activities with her fifteen-year-old daughter, monica. reference: * mouradian lm, als h, & coster w. neurobehavioral development of healthy preterm infants of varying gestational ages. journal of developmental and behavioral pediatrics. 2000;21:408-416. n i d c a p p r o f i l e laurie mouradian, scd, otr/l continued from page 7 developmental observer • �007 • 1� this column provides our readers with current information regarding developmental resources related to nidcap and developmental care. dvd series “focus on the brain” is a staff training program which reviews the current research on fetal and neonatal development and provides evidence that supports the implementation of individualized developmental family centered care within the nicu. there are three dvds in this program. one addresses the science of early brain development of high risk newborns in the nicu and conveys what is now known about the impact of early birth on the brain. the second dvd provides demonstrated practical developmental intervention strategies, which have been proven to enhance optimal brain growth and development in infants living in the nicu. the third dvd, “no matter how small,” is a parent’s guide to preterm infant behavior and development. for more information, please visit: www.vidahealth.com or call elizabeth hamlin at 800-550-7047. conferences the 23rd annual developmental interventions in neonatal care conference: november 11-15, 2007 in las vegas, nevada. a two day preconference (november 11 and 12) will include workshops highlighting nutrition in the high risk newborn, a specialized high risk feeding workshop, an introduction to individualized developmental care, and a half day session on post-discharge developmental difficulties. the main conference, opens november 13 and closes november 15 and includes a specialized multidisciplinary faculty of clinicians and researchers from medicine, nursing, psychology, education and rehabilitative medicine who will address the applicability of research and intervention strategies during a nicu stay and following discharge. the symposium on asphysia: october 1-2, 2007, modena, italy. for further information please contact: ms. barbieri valeria at: telephone: (+39)-0594225607/4222140. fax: (+39)-0594223770. email: barbieri.valeria@ policlinico.mo.it several upcoming contemporary forums conferences: » the national conference of neonatal nursing las vegas, nv, april 1-5, 2008 » the young child with special needs las vegas, nv, april 29-may 3, 2008 for further information go to: www.contemporaryforums.com. recent publications 1. als h. individualized developmental care for preterm infants, in tremblay re, barr rg, peters rdev, eds. encyclopedia on early childhood development [online]. montreal, quebec: centre of excellence for early childhood development. 2004;1-7. available at: http://www. excellence-earlychildhood.ca/documents/ alsangxp.pdf. 2. als h., butler s, kosta s, mcanulty g. the assessment of preterm infants’ behavior (apib): furthering the understanding and measurement of neuro-developmental competence in preterm and full-term infants. mental retard. dev. disabil. res. rev. 2005; 11(1):94-102. 3. bertelle v, sevestre a, laou-hap k, nagahapitiye, mc, sizun j. sleep in the neonatal intensive care unit. the journal of perinatal & neonatal nursing. 2007; 21(2):140-148. 4. bozzette m. a review of research on premature infant-mother interaction. newborn and infant nursing reviews. 2007; 7(1):49-55. 5. gray l, philbin, mk. effects of the neonatal intensive care unit on auditory attention and distraction. clinical perinatology. 2004; 31:243-260. 6. holsti l, grunau re, oberlander tb, whitfield mf. prior pain induces heightened motor responses during clustered care in preterm infants in the nicu, early human development. 2005; 81:293-302. 7. holsti l, grunau re, witfield mf, oberlander tf, lindh v. behavioral responses to pain are heightened after clustered care in preterm infants born between 30 and 32 weeks gestational age. clinical journal of pain. 2006; 22(9): 756-764. 8. kleberg la, hellstrom-westas l, wedstrom am. mothers’ perception of newborn individualized developmental care and assessment program (nidcap) as compared to conventional care. early human development. 2007; 83:403-411. available at: www.sciencedirect.com. 9. mcgrath jm, thillet m, van cleave l. parent delivered infant massage: are we truly ready for implementation? newborn & infant nursing reviews. 2007; 7(1):39-46. d e v e l o p m e n ta l r e s o u r c e s kathleen a. vandenberg, phd 1� • �007 • developmental observer 10. philbin mk. planning the acoustic environment of a neonatal intensive care unit. clinical perinatology. 2004; 31:331-352. 11. philbin mk, gray l, hilton, jc. the acoustic environment of the nicu: attention and distraction. neonatal review. 2006; 3(6). available at: www.eneonatalreview.com. 12. pierrat v, goubet n, peifer k, sizun j. how can we evaluate developmental care practices prior to their implementation in a neonatal intensive care unit? early human development. 2007; 83(7):415-418. available at: www.sciencedirect.com or www.elsevier.com/locate/earlhum.dev. 13. smith k. sleep and kangaroo care: clinical practice in the newborn intensive care unit: where the baby sleeps…the journal of perinatal & neonatal nursing. 2007; 21(2): 151-157. 14. vandenberg ka. state systems development in high-risk newborns in the neonatal intensive care unit: identification and management of sleep, alertness, and crying. the journal of perinatal & neonatal nursing. 2007; 21(2):130-139. 15. vandenberg ka. individualized developmental care for high risk newborns in the nicu: a practice guideline. early human development. 2007; 83(7):433-442 book chapter philbin jk, white rd, schaal b, hoath sb. chapter 29, part 2: the sensory environment of the intensive care nursery. in: martin rh, fanaroff aa, walsh mc, eds. neonatal-perinatal medicine: diseases of the fetus and infant. eighth edition. philadelphia: elsevier; 2005:597-603. special booklet for parents early arrival: finding the magic of everyday moments with your baby in the neonatal intensive unit (nicu). sponsored by johnson & johnson pediatric institute llc and zero to three. a twenty-page booklet ideal for nicu parents that addresses the emotional and interaction needs of parents and their infants in nicu. created by zero to three board members, parents, and multidisciplinary professionals including heidelise als, phd, joy browne, phd and the march of dimes, nicu family support. order from: johnson & johnson pediatric institute: phone within usa: 1-877-565-5465 outside usa: 001-631-208-9238 visit: www.jjpi.com we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with the rest of our readers. please send items for inclusion in the developmental observer to kathleen vandenberg, phd, email: kvandenb@mills.edu the newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.com. the assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.com for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor gretchen lawhon, rn, phd associate editor sandra kosta, ba text editor developmental observer • �007 • 17 dear editors, congratulations on the first copy of the developmental observer newsletter. it is an excellent effort and i enjoyed reading it immensely. i was very impressed by dr. als introduction. how fascinating to hear about her early days in infant development. i well remember seeing her present the old 16mm brazelton training film at chapel hill in the 1970’s. that was my first introduction to a baby assessment and i was an immediate fan and wanted to know more about her work. how far it has all come. i especially liked seeing the photos of nidcap trainers and learning about their work. please continue to have their pictures included with the information. the inclusion of the status of training centers in europe is fascinating. how nidcap has grown! what a wonderful journey it has been and how gratifying to know so many families all over the world are being reached and helped by the developmental approach that is the core of nidcap. again, congratulations on a very fine newsletter. it is one of the best i have ever read. as a retired nidcapper, i felt very nostalgic about no longer being a part of it. i wish you well. sincerely, jean gardner cole director emeritus/nidcap training center boston medical center dear editors, congratulations on the first issue of the developmental observer. it comes at the right time, with the various components of developmental training and evaluation in place, the nfi well established, and training centers around the world. without vision and persistence by the first pioneer among us, miss heidi (as we say in the south), none of this would exist, and thousands of peoples’ lives and careers would have remained untouched by a spectacular program. i am pleased to have witnessed and participated in the early history of nidcap and apib. for me, it all began with my co-neonatologist in tucson handing me a thick manuscript to read back in 1974. it was the brazelton exam. soon i was in boston meeting with t. berry brazelton who introduced me to my “trainer,” miss heidi. it was not an easy task to learn first the brazelton, then a modified brazelton for premies, next the apib, and finally the nidcap and how to train others--all while carrying on with clinical neonatology and academic responsibilities, and the nicu follow-up clinic. there were some extraordinary people in the sahuaro chapter who learned the apib and applied it as an early evaluative tool for the follow-up program--suzy poisson, susann hill-mangan, and deanne meyers (phoenix). back in those days, behavioral/developmental subjects were considered “fuzzy” and “soft” and were not respected in the medical field. in my later years of nicu work, i was sustained by the knowledge and application of nidcap. some of today’s current trainers had their earliest apib experience with the sahuaro apib chapter in tucson (now dissolved). those people are joy browne (first in albuquerque), karen smith, laura robison, inga warren, and erin ross. i am pleased, too, that several neonatologists who were pediatric residents in tucson now strongly embrace the nidcap approach. i’d like to suggest that the newsletter include history of an aspect of the nidcap program. as examples, did you every wonder if you could put a numerical score to your nidcap observations and use those scores to measure change over time, and perhaps correlate them with apib systems scores or later behavioral measures? did you ever wonder how and why the nidcap practicum came into existence? what did videos of later behavioral evaluation of intervention and non-intervention subjects reveal? understanding the history helps one make better sense of where the program is today, and it confers appreciation for the efforts of pioneers. other ideas for future issues are the recertification program and statistics on whether nicus that begin nidcap training complete the process or not, and defining what supports foster success or what barriers exist. respectfully, elsa sell, md retired neonatologist and active cattle farmer. dear editors, i was absolutely delighted to read the latest copy of the developmental observer. nidcap has grown and developed so very nicely over the years. from the time i was trained by gretchen in 1985 to now, 22 years later, the growth and acceptance of this approach has been phenomenal. this is, of course, due to dr. als, the other nidcap leaders, the outstanding professionals who are training and performing assessments, as well as the open-minded neonatologists who have come to accept this. my hat is off to you as you journey to france for your trainer’s meeting! martha kendall holmes, msw, acsw former co-director, sooner nidcap training center oklahoma city, oklahoma dear editors, i would like to congratulate you on an excellent first issue of the developmental observer; it is an extremely interesting and informative read. the work, tenacity and dedication of the nidcap association has been an inspiration to me in my own work as a nurse and infant massage instructor specializing in ‘positive touch’ in the neonatal unit. the newsletter is a great way to spread accurate information to the many neonatal units, worldwide, who are struggling to implement better care l e t t e r s t o t h e e d i t o r s 1� • �007 • developmental observer nidcap federation international board officers, members and staff president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens. harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@ cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap & apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens. harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu karen smith, rnc, med nidcap senior trainer st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap & apib training center email: kavandenberg@yahoo.com björn westrup md, phd director, scandinavian nidcap center email: bjorn.westrup@ karolinksa.se martha hopewell, msc nfi executive director email: nfidirector@nidcap.org for their families and may not have the support they would wish for. there are an increasing number of companies and individuals who are jumping onto the developmental care bandwagon, especially now that there is more evidence to show its benefits. however, their methods are often questionable and it is great to see that the nidcap team has been influential in the making of the vida health communications dvd, featured on the resources page. these dvds show developmental care at its finest and will be an indispensable resource for us all. i look forward eagerly to reading the next installment of dr. als’ fascinating story and wish the developmental observer the greatest success in the future. kind regards, cherry bond parent-infant interaction coordinator winnicott baby unit st mary’s hospital london w2 1ny www.cherrybond.com letters to the editors supporting families continued from page 10 motor and state systems becomes an essential time-saver. spending a small amount of time engaging the parent, settling them in with their infant, and providing supportive information about the effect they have on their baby will, in the long run, provide the busy staff member with more time for other tasks. baby care, not parent care. nicus are baby care focused, but more and more we are expanding our notion of who the patient is. because of the essential role in physiologic, motor, state, and self regulation that parents provide, caring for the parents must be a part of the consideration of caring for the baby. comfort for the parents, both physically and psychologically, will benefit the outcome of the baby. providing the best care for the baby involves including the parents as an essential part of the care plan. we now have a substantial base of evidence to indicate that parents provide autonomic, motor, and state regulation, as well as support for self-regulation. additionally, providing support for the dyad enhances the mother’s physical and psychological recovery and ultimately, the baby’s longterm development. reflecting on our attitudes, beliefs, and behaviors when we interact with parents, as well as examining our policies, procedures, and rituals in the nicu will provide opportunities for optimal support for parents in their essential parenting role. references: 1. als h, butler s. neurobehavioral development of the preterm infant. in martin rj, fanaroff aa, walsh md eds. fanaroff and martin’s neonatal perinatal-medicine: diseases of the fetus and infant, eighth edition. philadelphia: elsevier mosby; 2006. 2. browne j v, sanchez e, langlois a, smith s. from visitation policies to family participation guidelines in the nicu: the experience of the colorado consortium of intensive care nurseries. neonatal, paediatrics and child health nursing. 2004;7(2):16-23. 3. browne jv. the early relationship environment: physiology of skin-to-skin contact for parents and their preterm infants. clinics in perinatology. 2004;31(2):287298. developmental observer • �007 • 1� references: 1. papousek h, papousek m. intuitive parenting: aspects related to educational psychology. european journal of psychology of education. 1989; 4 (2):201-210. 2. bowlby j. attachment. vol i. new york: basic books, inc.; 1969. 3. als h. the human newborn and his mother: an ethological study of their interaction. (doctoral dissertation, university of pennsylvania, 1975). dissert abs int. 1975;36:5. 4. als h. the newborn communicates. j commun. 1977;27:66-73. 5. grossman k. die wirkung des augenöffnens von neugeborenen auf das verhalten ihrer mutter. geburtshilfe und frauenheilkunde. 1978;38:629-635. 6. ambrose a. the age of onset of ambivalence in early infancy: indications from the study of laughing. journal of child psychology & psychiatry. 1963;4(3):167-181. 7. ambrose a. stimulation in early infancy. oxford, england: academic press; 1969. 8. carpenter gc, tecce jj, stechler g, friedman s. differential visual behavior to human and humanoid faces in early infancy. merrill-palmer quarterly. 1970;16(1):91-108. 9. carpenter gc. visual regard of moving and stationary faces in early infancy. merrillpalmer quarterly. 1974;20(3):181-194. 10. carpenter gc, london univ. saint mary’s hospital medical s. mother-stranger discrimination in the early weeks of life; 1973. 11. maratos o. the origin and development of imitation in the first six months of life; 1973. unpublished manuscript. 12. meltzoff an, moore mk. imitation of facial and manual gestures by human neonates. sc. 1977;198:75-78. 13. blurton jones n. characteristics of ethological studies of human behavior. in: blurton jones n, ed. ethological studies of child behavior. cambridge: cambridge university press; 1972:3-37. 14. blurton jones n. ethology and early socialization. in: richards mpm, ed. the integration of a child into a social world. cambridge: cambridge university; 1974:263295. 15. blurton jones n. growing points in human ethology: another link between ethology and the social sciences. in: bateson ppg, hinde ra, eds. growing points in ethology. cambridge: cambridge university press; 1976:427451. 16. brazelton tb. neonatal behavioral assessment scale. london: heinemann; 1973. 17. als h. autonomous state control: the first stage in successful negotiation of parentinfant interaction. paper presented at: meetings of the american academy of child psychiatry, 1976; toronto. 18. brazelton tb, koslowski b, main m. the origin of reciprocity in the mother infant interaction. in: lewis m, rosenblum la, eds. the effect of the infant on its care giver. vol i. new york: john wiley and sons, inc.; 1974:49-76. 19. brazelton tb. early parent-infant reciprocity. in: gardner jk, ed. readings in developmental psychology. boston: little, brown and company; 1978:71-78. 20. brazelton tb, als h. four early stages in the development of mother-infant interaction. the psychoanalytic study of the child. 1979;34:349-369. 21. als h, tronick, e., brazelton, t.b. the achievement of affective reciprocity and the beginnings of the development of autonomy: the study of a blind infant. jrnl. am. ac. of child psy. 1980;19:22-40. 22. adamson l, als h, tronick e, brazelton tb. the development of social reciprocitythe development of social reciprocity between a sighted infant and her blind parents. a case study. journal of the american academy of child psychiatry. 1977;16:194-207. 23. als h. social interaction: dynamic matrix for developing behavioral organization. in: uzgiris ic, ed. social interaction and communication in infancy: new directions for child development. san francisco, calif.: jossey-bass; 1979:21-41. 24. als h. the unfolding of behavioral organization in the face of a biological violation. in: tronick e, ed. human communication and the joint regulation of behavior. baltimore, md: university park press; 1982:125-160. 25. mintzer d, als h, tronick ez, brazelton tb. parenting an infant with a birth defect: theparenting an infant with a birth defect: the regulation of self-esteem. zero to three. 1985;5(5):1-8. 26. tronick e, als h, brazelton tb. the infant’s capacity to regulate mutuality in face to face interaction. j. communication. 1977;27:74-80. 27. tronick ed, als h, brazelton tb. mutuality in mother-infant interaction. journal of communication. 1977;27:74-79. 28. tronick e, als h, adamson l, wise s, brazelton tb. the infant’s response to entrapment between contradictory messages in face-to-face interaction. journal of the american academy of child psychiatry. 1978;17:1-13. 29. tronick ez. emotions and emotional communication in infants. amer. psychol. 1989;44:112-119. 30. als h. manual for the naturalistic observation of the newborn (preterm and fullterm). vol revision. boston: the children’s hospital; 1984. 31. als h, lester bm, tronick ez, brazelton tb. towards a research instrument for the assessment of preterm infants’ behavior. in: fitzgerald he, lester bm, yogman mw, eds. theory and research in behavioral pediatrics. vol 1. new york: plenum press; 1982:35-63. 32. als h, lester bm, tronick ez, brazelton tb. manual for the assessment of preterm infants’ behavior (apib). in: fitzgerald he, lester bm, yogman mw, eds. theory and research in behavioral pediatrics. vol 1. new york: plenum press; 1982:65-132. 33. als h. toward a synactive theory of development: promise for the assessment of infant individuality. inf mental health j. 1982;3:229-243. 34. als h, lawhon g, brown e, et al. individualized behavioral and environmental care for the very low birth weight preterm infant at high risk for bronchopulmonary dysplasia: neonatal intensive care unit and developmental outcome. pediatr. 1986;78:1123-1132. acknowledgments comments from barbara clancy, ph.d. associate professor, department of biology, university of central arkansas (conway), dr. elie d. al-chaer, associate professor of pediatrics, neurobiology and developmental sciences, uams college of medicine; dr. bjorn merker, professor of psychology, uppsala university (sweden), and dr. r. whit hall, associate professor of pediatrics, uams college of medicine, are gratefully acknowledged. this research was supported by the national institutes of health (u10 hd50009-02; p20 rr018765-02). references: 1. finlay bl, darlington rb. linked regularities in the development and evolution of mammalian brains. science. 1995;268:1578-84. 2. clancy b, darlington rb, finlay bl. translating developmental time across mammalian species. neuroscience. 2001; 105(1):7-17. 3. lee sj, ralston hjp, drey ea, partridge jc, rosen ma. fetal pain: a systematic multidisciplinary review of the evidence. jama. 2005; 294(8):947-54. 4. mellor dj, diesch tj, gunn aj, bennet l. the importance of ‘awareness’ for understanding fetal pain. brain research reviews. 2005; 49:455-71. 5. hanganu il, kilb w, luhmann hj. functional synaptic projections onto subplate neurons in neonatal rat somatosensory cortex. journal of neuroscience. 2002; 22:716576. 6. clancy b, silva-filho m, friedlander mj. structure and projections of white matter neurons in the postnatal rat visual cortex. journal of comparative neurology. 2001; 434(2):233-52. 7. kostovic i, stefulj-fucic a, mrzljak l, jukic s, delalle i. prenatal and perinatal development of the somatostatin-immunoreactive neurons in the human prefrontal cortex. neuroscience letters. 1991; 124(2):153-6. 8. kostovic i, judas m, rados m, hrabac p. laminar organization of the human fetal cerebrum revealed by histochemical markers and magnetic resonance imaging. cerebral cortex. 2002;12(5):536-44. 9. perkins l, hughes e, glover a, kumar s, rutherford m. exploring subplate evolution of the fetal cortex using magnetic resonance imaging. in: autumn meeting of the neonatal society; 2005 november 24th; london: the neonatal society. 2005. 10. cauller l. layer i of primary sensory neocortex: where top-down converges upon bottom-up. behavioral brain research. 1995;71:163-70. 11. koch c, davis jl. large-scale neuronal theories of the brain. cambridge, ma: mit press; 1994. 12. anand kjs, rovnaghi c, walden m, churchill j. consciousness, behavior, and clinical impact of the definition of pain. pain forum. 1999;8(2):64-73. 13. penfield w, jasper hh. epilepsy and the functional anatomy of the human brain. boston: little, brown & co.;1954. 14. danober l, deransart c, depaulis a, vergnes m, marescaux c. pathophysiologic mechanisms of genetic absence epilepsy in the rat. prog neurobiol. 1998;55(1):27-57. 15. edelman db, baars bj, seth ak. identifying hallmarks of consciousness in nonmammalian species.consciousness & cognition. 2005;14:169-87. 16. seth ak, baars bj, edelman db. criteria for consciousness in humans and other mammals. consciousness & cognition. 2005;14:119-39. 17. edelman gm. the mechanisms of consciousness. in: edelman gm, ed. wider than the sky: a revolutionary view of consciousness new york: penguin books; 2004:48-59. 18. marin-padilla m. developmental neuropathology and impact of perinatal brain damage. ii: white matter lesions of the neocortex. journal of neuropathology and experimental neurology. 1997;56:219–35. 19. takada k, shiota m, ando m, kimura m, inoue k. porencephaly and hydranencephaly: a neuropathological study of four autopsy cases. brain & development. 1989;11(1):51-6. 20. shewmon da, holmes gl, byrne pa. consciousness in congenitally decorticate children: developmental vegetative state as self-fulfilling prophecy. developmental medicine & child neurology. 1999;41(6):364-74. 21. merker b. consciousness without a cerebral cortex: a challenge for neuroscience and medicine. brain & behavioral siences. 2006;(in press). 22. ledoux je, risse gl, springer sp, wilson dh, gazzaniga ms. cognition and commissurotomy. brain. 1977;100(1):87-104. 23. shewmon da. a critical analysis of conceptual domains of the vegetative state: sorting fact from infancy. neurorehabilitation. 2004;19(4):343-7. 24. schiff ndm, rodriguez-moreno dm, kamal am, et al. fmri reveals large-scale network activation in minimally conscious patients. neurology. 2005;64(3):514-23. 25. derbyshire swg. can fetuses feel pain? bmj. 2006;332:909-12. 26. williams c. framing the fetus in medical work: rituals and practices. social science & medicine. 2005;60(9):2085-95. 27. fisk nm, gitau r, teixeira jm, giannakoulopoulos x, cameron ad, glover va. effect of direct fetal opioid analgesia on fetal hormonal and haemodynamic stress response to intrauterine needling. anesthesiology. 2001;95(4):828-35. 28. slater r, cantarella a, gallella s, et al. cortical pain responses in human infants. journal of neuroscience. 2006;26(14):3662-6. 29. bartocci m, bergqvist ll, lagercrantz h, anand kjs. pain activates cortical areas in the preterm newborn brain. pain. 2006;122(1-2):109-17. continued from page 4 continued from page 6 �0 • �007 • developmental observer national nidcap training center children’s hospital boston, boston, massachusetts usa contact: sandra m. kosta, ba email: sandra.kosta@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center, oklahoma city, oklahoma usa co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu carolina nidcap training center wakemed, division of neonatology, raleigh, north carolina usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu or jhelm@wakemed.org colorado nidcap center the children’s hospital, denver, colorado usa director and contact: joy v. browne, phd, rn email: browne.joy@tchden.org west coast nidcap training center mills college, department of education, oakland, california usa director and contact: kathleen vandenberg, phd email: kvandenb@mills.edu st. luke’s nidcap training center st. luke’s regional medical center, boise, idaho usa contact: karen m. smith, rnc, bsn, med email: smithka@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital, camden, new jersey usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu scandinavian nidcap center astrid lindgren children’s & karolinska university hospital, stockholm, sweden contact: ann-sofie gustafsson, rn, bsn email: nidcap@karolinska.se french nidcap center university hospital, brest, france co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr the dutch nidcap training center of leiden leiden university medical center, leiden, the netherlands director and contact: celeste maguire, rn, ms email: nidcap@lumc.nl or c.m.maguire@lumc.nl sophia nidcap training center erasmusmc-sophia, children’s hospital, rotterdam, the netherlands co-director and contact: monique oude reimer, rn email: m.oudereimer-vankilsdonk@erasmusmc.nl centro latinoamericano nidcap otamendi santorio otamendi, buenos aires, argentina director and contact: graciela basso md, phd email: grbasso@fibertel.com.ar uk nidcap training centre at st. mary’s st. mary’s nhs trust, london, england director and contact: inga warren, dip cot, msc email: inga.warren@st-marys.nhs.uk university of illinois medical center at chicago (uimcc) nidcap training center university of illinois medical center at chicago, chicago, illinois usa contact: jean powlesland, rn, ms email: jpowlesl@uic.edu the nidcap training center at connecticut children’s medical center connecticut children’s medical center hartford, connecticut usa contact: dorothy vittner, rn, bs email: vittner@sbcglobal.net ® nidcap federation international (nfi) www.nidcap.org become a member of the nfi the nfi has expanded opportunities for membership to certified nidcap professionals, nidcap trainees, and families of premature infants. please join us! for more information and the online application form, visit our website at: www.nidcap.org/become.html by order of establishment n i d c a p t r a i n i n g c e n t e r s 2016 vol. 9 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “our bodies have five senses: touch, smell, taste, sight, hearing. but not to be overlooked are the senses of our souls: intuition, peace, foresight, trust, empathy.” joy bell chappel’s utopia written by mary stanford, phd(c), ms, ccc-slp, an nfi professional member, colleague and dear friend of john chappel. her passion to assist infants and families, sparked by john, will enable her to carry on his legacy of healing and teaching in the nicu “there is no utopia. there never will be. there is only the valiant attempts of each person to live spiritually in a world where spirituality is almost impossible.” –deng ming-dao he certainly was valiant in his attempts to live spiritually. in fact, john chappel lived and healed others though his deep connection to his spirituality. his religion was kindness. his craft was compassion. he could see, hear, and feel lots of things that we can not. no matter how big or how small his patient, his intuition always guided him toward those in need of healing. he often knew when a fellow human being was facing a problem before they themselves knew. i believe this is why he was such an effective healer, educator, friend, and servant-as he often referred to himself. in his presence, it was as if the environment instantly became technicolored when he entered it. there was an energy that surrounded john, almost as if there was a force field wrapped around him. amazingly, you could feel the magnetism the minute he entered. you somehow recognized almost immediately that you would never be the same after meeting him. never the same, but better. after an interaction with john chappel, no matter the length of time, you felt better. he helped us all to breathe. he would always relieve us of our discomfort. it was his second nature. those who knew him felt calm and often relieved in his presence. this was observed most in the eyes and body language of every single parent he ever worked with. they would often look at him with amazement as he dazzled them with his endearing smile, confident yet comforting voice, and his kindness. he would often walk into the newborn intensive care unit and somehow knew where the infant and family were that needed his support. he gravitated to those bedspaces and never left their side until they were better. minutes, hours, days, weeks, months, years; it didn’t matter. whatever the patient and family needed to heal, he gave his everything, willingly and without complaint. john chappel was born to be a neonatal physical therapist. it’s impossible to determine if his 35 week premature birth in 1953 predestined him to become the impeccable clinician be was, however it’s hard to believe that there was not some sort continued on page 2 table of contents chappel’s utopia ....................................... 1 family voices ............................................. 4 nidcap federation international family advisory council ............................ 6 supporting families ................................. 8 the infant behavioral assessment and intervention program, llc ............ 10 developmental resources ..................... 22 mary stanford and john chappel during earlier times. 2 • 2016 • developmental observer a semi-annual publication of the nidcap federation international ©2016. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd e. hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer of connection. his brilliant mind, compassion, and healing hands were his tools. without question, his role in the nicu went beyond the confines of the job description. he was a healer, visionary, inventor, student, and pioneer who assisted in developing modern neonatal therapy. one afternoon in september 2001, i sat typing a speech and language evaluation on a three year old patient who could not produce the consonant cluster “tr”. although his speech development was typical for his age, this was a problem for his family. he substituted ‘f ’ for this consonant cluster in every position of every word. a significant problem since several times a day, the child would talk about his favorite things, like “fire trucks”. having received a well-rounded educational and clinical training in speech pathology, my most recent work had been at a sub-acute pediatric facility in a borough of new york city where the sickest infants and children are cared for. as i typed this patient’s evaluation, my mind was reviewing how exactly and in what creative way i was going to help this sweet boy and his family. at that moment, a physical therapist who had been working with a young child outside my door walked into the office and said “hi. i heard that you know how to feed babies who have been trached”. this was true. in fact, this was a population that i felt compelled to know more about so i’d recently taken a three day course on infants with tracheostomy. i desperately missed treating infants and working with their families and it had only been a few weeks since i had left that facility. she then said “do you know john chappel? you need to call him, he needs to meet you. call him tonight. he will be expecting your call at 7:30 p.m. he is the greatest clinician you will ever meet. he cares for of all of the babies here.” i believe fate intervened that day. for the next 12 years, john and i worked closely together in a level iii nicu, as well as with patients on other acute care units, in pediatric sub specialty clinics, and in other outpatient settings. john had an unbelievable command of human anatomy and physiology, a profound knowledge of embryological development, coupled with the power of healing infants through his hands. i often watched in awe as he healed the most fragile infants and their parents through his gentle, almost untraceable touch. one morning as we prepared for interdisciplinary nicu rounds, john and i stopped off at one of the nicu’s small nursing stations. there was a very small scale that nurses mainly utilized to weigh an infant’s diaper. john looked over at me and smiled. he said ‘close your eyes and touch the scale as if you would touch an infant.’ he then said, ‘don’t worry, there’s no wrong answer here.’ we both did this three times each. he looked at me afterward and said, ‘impressive!’ i looked at him puzzled. he replied ‘a healing touch can be accomplished with about a gram’s worth of pressure, no more. babies should never have more than that and they don’t need more than that. that day, we calibrated our hands together using the scale. after that day, whenever i walk into a patient care area, i always find the scale and calibrate. when john healed infants, he healed their families, and the staff caring for that infant and family, literally. john was motivated by his passion to heal the sickest infants and their families, to assist neonatal practice professionals to understand how important it is for them to know the best ways to provide this care, every day, with each patient and family we served, with no exceptions. john taught others often by presenting quotes from other famous philosophers, educators, inventors, and visionaries. he himself was famous for his own quotes such as “when i‘m working with a baby, my mind is in my hands”. in looking back, the unit we worked in together for so many years was our own utopia, perfect. we had all that we needed to provide the highest level of individually supportive care. john was a devout nidcap professional for over 30 years. he lived and breathed the synactive theory, incorporating it into each interaction with infants and families, and in his developing of ideas for the world to better understand it. all in a valiant effort to support all human kind. he would often say that as clinicians and practicing humans, we must listen more than we speak and act only when we can be supportive, compassionate, and intentional so that we can heal others with kindness and medicine. in a letter he sent me years ago, he wrote “let compassion and idealism be at the root of everything that you do. keep your ideals in clear focus, and never compromise those ideals.” i know for certain this is a mantra he had for himself as well. it continues to be mine. john instilled in me that bringing your intentions to the bedside was critical. “leave your ego at the door and set your intentions for the day.” john brought his intentions to infants and their families each day. he prepared for each work day by developmental observer • 2016 • 3 reading his daily meditation, setting his intention, and always had a ‘word of the day.’ often, he would write down that word on the smallest piece of paper, then place it into his shirt pocket to carry it with him as he interacted with the world. ironically, his last meditation and word of the day was “utopia.” it was a great honor to have worked with john chappel but an even greater honor to have had him as a friend. he did not just teach me the therapeutic theory of synactive caregiving, or how to handle, position, or touch an infant to facilitate improved gross motor development or respiratory function; or how to feed infants; he showed me what was possible. he held expectations of greatness from all who take on the incredible responsibility caring for infants and their families. on the front of every notebook he carried with him into the nicu each day, he wrote his name and a phrase often stated by dr. als, his hero, “everything matters”. because he would use a soft whisper to speak while in the nicu, often when he observed excellent caregiving being offered to an infant at a bedside, he would just pick up his notebook for the bedside nurse to see, underline that phrase with his pointer finger and mouth those two words. by doing this, he gently reminded us every day that in fact, everything the infant and family experience in our care, matters. september in new york is beautiful. you can feel the summer slip away on labor day weekend and fall enters with crisp cool evenings and bright blue cloudless skies. september has always been john’s favorite month to spend in east hampton, ny. this was his sanctuary, his place of healing, his heaven on earth, his personal utopia. it was here, in one of his many ‘thinking notebooks’, this passage was found shortly after he passed. life is a series of ever deepening dedications. if we are fortunate when we are born, our parents dedicate their unconditional love and lives to usand we to them. brothers and sisters, aunts and uncles. then our community and religion ask us to dedicate ourselves to them each week in services, each day in behaviors. friends demand the same, and hopefully receive the sameall our lives. somewhere in the process, we are gifted if we learn to love. the gift comes in being able to put our tears aside to share that love with all and those closest to us. then if you are really fortunate you become an empath and dedicate yourself to using this gift each moment for others. to be able to sustain this through a profession that allows the practice of true empathy by touching others with your hands, or voice or deeds can “easily” fulfill your human destiny and dedicate your life to others. i was this lucky. —john chappel nidcap care in the moment family intimacy u c s f b en io ff c hi ld re n’ s h os pi ta l o ak la nd mary stanford and john chappel 4 • 2016 • developmental observer fa m i ly v o i c e s niklas hauswald lessons learned from life’s unexpected turns it is human nature to assume the worst when life events throw us a curve ball. our minds can play tricks on us and in the moment, we are scared and can be driven by fear. when we come through on the other side, we realize that unexpected circumstances can teach us valuable lessons, and when we are surrounded by the right resources and support systems, we thrive. —debra paul. otr/l “the power of the mind is often more scary than the actual situation” —niklas hauswald i think back to the first ultrasound when we found out we were expecting twin girls. my wife beatrice and i were told that her pregnancy was considered a “high risk pregnancy” which meant we would need to check on the girls every month to monitor their health as they were growing. i was getting ready to eat my daily lunch with the students i teach, at the school where i work. my lunch was suddenly interrupted by an urgent phone call from beatrice who was at the hospital getting one of her routine check-ups on our daughters. i answered the phone and the first thing she said was “it does not look good.” i could tell from the tone of her voice that she was very worried. something had gone wrong, terribly wrong. the doctor told us the twins had twin to twin syndrome or ttts. little did we know what lay in store for us. this was the beginning of a journey that we could have never imagined or thought possible. my wife was forced to give birth to our baby girls a few weeks later, even though it was clearly too early for them to be born. they each only weighed about one kilogram and were in incubators hooked up to many wires and cables. we longed to touch them and were not able to hug or hold them as parents do with a new baby. the following week after the girls were born was like being on a rollercoaster. we were filled with so many emotions. the ups and downs were intense as we held on tight during the rollercoaster ride of having girls in the newborn intensive care unit (nicu). we were overwhelmed by love and fear. this was the beginning of a new chapter in our lives. we learned to appreciate the small gains that these wonderful little babies made as they became bigger and stronger. one day a few weeks later, the doctor discussed a method of care with us called nidcap. my wife and i were so excited! we were told that we could do “skin-to-skin or kangaroo” with our babies, even though they were both still in an incubator hooked up to monitors. what a fantastic way to get to know our girls! i remember the very first time we held our precious daughters. the nurse opened the side of the incubator and gently moved each of them to our laps. what an amazing experience to feel our tiny babies on our chests. it was such a drastic difference, from not being able to have that much physical contact with our little ones, to actually holding them in our laps for hours…and believe me, we did! as we became more comfortable holding our girls, not only did we become more comfortable with the monitors, but we also learned what the girls were telling us by their signals or behaviors. as the weeks (a total of nine) went by it felt like we really came to know the doctors and nurses well as they provided us with education on how to help our babies. hand hygiene was very important. we learned we needed to be very quiet due to the girls’ sensitivity to sounds because of their prematurity. i remember we had a small blanket that we gave to each of our girls every night. we had placed these blankets inside our shirts to let them smell the fragrance of our bodies as they fell asleep. all of the things we were taught helped our girls “get to know us” in a comfortable way. we learned to hold them gently against our chests so that they could feel our hearts beat and feel more secure and calm. it was a very thorough education in being a parent. the doctors and nurses were very good “teachers,” and my wife and i were, of course, eager to learn every single bit that there was to learn! the nursery staffs’ aim was to involve us in as many parts of our girls’ lives as possible. we became experts of our own children! one day a scary thing came up. one of our girls needed to be intubated because the cpap (a mask that provides oxygen) was not enough. my wife was ready to run out of the nursery beatrice and agnes developmental observer • 2016 • 5 and cry out in fear at the sight of being intubated. the nurses encouraged her to stay and provide support to our daughter. to this day she does not regret doing so. the staff were there to help her face her fear which allowed her to be there for our daughters, and in doing so, she came to realize that “the power of the mind is often more scary than the actual situation.” the nidcap method itself does not only focus on the babies themselves, but also focuses on the parents. we were encouraged to take on more and more responsibility for the girls’ caregiving such as changing their diapers, bathing them, and taking care of their other needs. it almost became another job. we used to say to each other “our ordinary work and lives are on hold.” the idea of involving the father in every aspect of care made me, as the father to my twin girls, feel really important from the very beginning. the nidcap method focused so much on the whole family and also helped us with the recovery process. as parents that lived through the experience of having our babies in the nicu, we came to an understanding of the importance of our role as parents. spending almost every waking hour with your premature infant is a gift. as our girls grew, it was exciting to see them become healthier and stronger. i still remember that day when we were able to take them out on a walk with our stroller while they were still in the nursery. it was a relief to finally take them outside and to feel and experience what other families do with their baby. as the girls became more stable they were finally able to go home. to this day i still remember all the tears that fell from my cheeks when i drove home with our daughters after they were discharged from the hospital. i felt very well treated by the doctors and nurses and thankful to the beloved nidcap method. love, niklas hauswald & beatrice hauswald from left to right agnes and siri, 2 years and 5 months, linköping, östergötland, sweden royal hotel carlton via montebello 8 bologna, italy, 40121 hosted by the italian modena nidcap training center (by invitation only) october 26-29, 2016 annual nfi membership meeting wednesday, october 26, 2016 3:45pm – 5:45pm royal hotel carlton via montebello 8 bologna, italy, 40121 6 • 2016 • developmental observer samantha butler, phd, nidcap & apib professional mandy daly, dip. h diet & nutrition, dip. ki massage, acii, dldu t he nidcap federation international (nfi) family advisory council (fac) was formed in 2016 to increase alliances and support the growth of the nfi. the council will work to build relationships with premature and ill newborn parent organizations, create world-wide ambassadors for the nfi, explore partnering opportunities with parent organizations to support shared goals, advise on ways to integrate nidcap into hospital settings and broaden the nfi’s reach. the council includes board appointed individuals, with a prematurely born or ill newborn in their family, as well as individuals who represent parent organizations. the council members are from around the world and are overseen and facilitated by the nfi advancement committee. the council members include co-chairs mandy daly and samantha butler and 11 members: jennifer degl, deb discenza, yamile jackson, nina nikolova, marni panas, debra paul, keira levitsorrells, asta radzeviciene, susan tomaro, mark delucchi and lelis vernon. please see descriptions of each member below. mandy daly, dip. h diet & nutrition, dip. ki massage, acii, dldu is a par-ent of a preterm infant born in 2006 and is one of the founding members and the director of advocacy and policy making of the irish neonatal health alliance. mandy sits on the parents advisory board of the european foundation for the care of newborn infants (efcni) and is a member of the nfi board of directors. mandy is a regular contributor to the nidcap blog where she has shared the story of her daughter’s premature birth. mandy currently resides in ireland with her family. samantha butler, phd, nidcap and apib professional is a mother of twin boys, elliot and nathaniel, born late preterm and now thriving in first grade. she is a developmental and clinical psychologist at boston children’s hospital (bch) and an assistant professor at harvard medical school, boston, massachusetts, usa. she is a nidcap professional, a member of the nfi and a contributor to the nidcap blog. at bch she is a member of dr. heidelise als’ research team in neurobehavioral infant and child studies laboratory. she is a member of the cardiac neurodevelopmental program at bch where she provides education on nidcap care and is the inpatient attending psychologist in cardiology. dr. butler is also a member of the cardiac neurodevelopmental outcome collaborative. samantha currently resides in boston, usa with her family. jennifer degl, ms is the mother of four, including a 23 week micro preemie. she is also the author of from hope to joy: a memoir of a mother’s determination and her micro preemie’s struggle to beat the odds, and a writer for huffington post parents and the mighty. jennifer currently resides in new york, usa with her family. deb discenza, ma is the mother of becky born at 30 weeks gestational age. she is also the founder and former publisher of preemieworld, co-author of the preemie parent’s survival guide to the nicu and she has a tenure with the award-winning preemie magazine. she is the founding member and steering committee member of the national premature infant health coalition and a founding member and leadership team member of the preemie parent alliance. she is a regular column editor for the neonatal network’s neonatal network journal, and a columnist for both the quarterly newsletter for the council of international neonatal nurses (coinn) and for neonatal intensive care magazine. deb received an award from the national perinatal association for her work in supporting families during the nicu journey. deb is also a contributor to the nidcap blog. she currently resides in washington dc, usa with her family. yamile jackson, phd, pe, pmp is the mother of four children, including zachary who was born prematurely at 28 weeks. her son is the inspiration behind the development of the nurturing technology tm from nurtured by design® [the zakytm and kangaroo zak®]. yamile has a phd in ergonomics and human factors engineering, is a licensed professional engineer in texas, and holds certifications as a project management professional and as professional kangaroo caregiver. zachary is in high school, learning to drive, and is nurtured by design’s cio (chief inspirational officer). yamile currently lives in houston, texas, usa with her family. nidcap federation international family advisory council http://nidcap.org/blog/author/mandy-daly/ http://nidcap.org/blog/author/samanthabutler/ http://nidcap.org/blog/author/debdiscenza/ developmental observer • 2016 • 7 nina nikolova, bs is the happy mother of twins born premature at 29 weeks, martin and joana. she is chairwoman and a cofounder of the bulgarian foundation “our premature children”, the first bulgarian non-profit organization which supports premature babies and their families. she founded the organization following the difficult birth and loss of twins. she shared her emotional journey on the nidcap blog. nina currently resides in sofia, bulgaria with her family. marni panas, bs is a proud parent to two special boys, alex & andrew. it was her sons’ birth at 24 weeks gestation, five months of experiences in the neonatal intensive care unit (nicu) that followed and the passing of andrew that introduced marni to the world of health care, patient & family centred care and nidcap. she served as one of the first co-chairs of the stollery children’s hospital, canada, family centred care council and as the coordinator of family centred care. she is currently a senior employee relations advisor with alberta health services, family and staff participant on the stollery children’s hospital nidcap working group, and an active member of the nfi. marni is also an engaged member of her community where she received the human rights award from the john humphrey centre for peace and human rights, has recently been nominated as an edmonton ywca woman of distinction and named a camrose composite high school alumnus of distinction for her commitment to creating a community where diversity is not only accepted, but celebrated. marni currently lives in alberta, canada with her family. debra paul, otr/l, nidcap professional, is the proud parent of twins who were born late preterm. one of her twins has graduated from college and the other twin is set to graduate from college this coming winter. she is an occupational therapist and the quality & safety/clinical effectiveness program coordinator for the division of occupational and physical therapy at children’s hospital colorado. she is also a nidcap professional and practices in the neonatal intensive care unit (nicu) at children’s hospital. debra is an active member of the nfi. debra lives in colorado, usa with her family. asta radzeviciene, mba is the mother to margarita born preterm at 26 weeks. she is also the founder and president of the lithuanian premature baby association, neisnesiotukas, an international organization in conjunction with the efcni and creator of “fairy of hope”. asta lives in vilnius, lithuania with her family. keira levit sorrells, bsfacs is the mother of triplets, avery, lily, and zoe, born at 25 weeks. avery and lily spent four months in the nicu and zoe was there for 9.5 months. after coming home, zoe was rehospitalized at 14 months and died suddenly from a secondary infection. as a result of those experiences, keira founded the zoe rose memorial foundation which offers support to parents of premature infants and those who have lost an infant; as well as the preemie parent alliance (ppa), where she now serves as president. ppa is a national network of 33 nicu parent support organizations that collaborate to share best practices and work together with professional provider associations to improve support for nicu families. she also serves on steering committees for the national coalition for infant health, the mississippi perinatal quality collaborative and the national network of perinatal quality collaboratives. keira resides in mississippi, usa with her family. susan tomaro, msj and mark delucchi, phd are the proud parents of three children, one born preterm at 31 weeks. susan is a special education teacher and mark is a clinical psychologist. they experienced the nidcap program with the birth of their son. once through the nidcap program, they became involved in helping many other parents who had premature infants and they contributed to the nfi’s film, nidcap three decades of training and support highlighting how this program can support the family, the infant and the entire staff. susan and mark live in california, usa with their family. lelis vernon, ba is mother of a premature infant born at 25 weeks. she is the first volunteer nicu parent to work with the nicu team at baptist children’s hospital, miami, florida and since then she has worked to create, grow, and coordinate all activities of the parent advisory council (pac). she is on the clinical guidelines committee as a public member at american college of physicians. she actively participates and collaborates in specific study groups and unit committees of the nicu (baptist children’s nicu fcc committee, vermont oxford network team, qi teams). she is an active member of the nfi. lelis lives in florida, usa with her family. currently, the fac is working with the nfi board in support of a more international and family accessible nidcap website and facebook page. the fac has enlisted several families of preterm infants to contribute towards the nidcap blog over the coming months. they are also collaborating with the nfi board on their world prematurity day plans. please contact mandy daly or samantha butler to learn more about about the opportunities of the fac. http://nidcap.org/blog/author/ninanikolova/ 8 • 2016 • developmental observer s u p p o r t i n g fa m i l i e s melissa r. johnson, phd families face a long list of challenges when their infant or infants are hospitalized in an intensive care nursery. one challenge that is not often discussed is the care of older brothers and sisters. as with so many issues in the nursery, this challenge can also be a gift, as the urgent needs of siblings may, with the right support, help parents to stay in touch with healthy family routines. while parents who are experienced with breastfeeding, swaddling, diapering and other baby care skills may have more confidence. however, spending the optimal amount of time caring for the preterm or sick infant in the hospital, while still caring for siblings at home, may feel overwhelming in settings that do not provide care for the family together. many parents have shared with me, that no matter where they are, they feel guilty or torn because they aren’t somewhere else. hospital policies vary both in the united states and internationally, but it is not uncommon for there to be rules that limit sibling access to the nursery (some rules are based on the age of a sibling, especially during times of the year when viral illnesses are more common). when siblings are not allowed to experience the joy of being with their baby brother or sister, parents may face the challenge of helping their older children to see the baby as a real person, rather than an abstract figure that lives far away in a hospital, and keeps mother and father away from them. as young children are welcomed into the nursery, families often benefit from professional guidance on how to best support the siblings for this experience, (guided by the age and maturity level of the sibling). with the use of pictures and video preparation, along with simple and concrete explanations, even very young children can experience the sight of their quietly nested sibling in a positive way. after all, young children don’t necessarily have expectations about what a new baby should look like, and can be guided to admire tiny fingers and fuzzy hair. parents, who are going through periods of major stress, as they cope with their newborn’s hospitalization, may struggle to create an emotionally calm and safe space for the sibling, whose little world has also been turned upside down. toddlers, preschoolers or school-age children may act out their own worries and stresses during the enormous changes happening in their family. parents need access to information about how young children respond to stress, including behaviors such as regression in toileting, sleep, language and general cooperation. while there is surprisingly little literature on this topic, there are a number of clinically tested strategies that clinicians have developed over the years in conjunction with wise parents. some of these strategies include: • providing siblings with the opportunity to play out their perceptions and feelings about their new baby brother or sister with a small doll, a premie diaper, small baby bottle, and swaddle blanket, etc. in addition, a large clear plastic food storage container can serve as an incubator; • offering photos of the real baby, and of the well caredfor baby doll, could be mounted together for the child, to reinforce the reality of his new baby brother or sister; • using smartphone technology for the opportunity to share frequent photos and short video clips of the infant with the sibling. this can be especially powerful. in addition to watching videos of the baby, siblings could also record their own message of love for their new sibling; • creating videos in situations where siblings can be with their new brother or sister, these videos of them together will become family treasures; • drawing pictures for the new baby, and seeing photos of the picture hung up in the baby’s hospital space, can help children of all ages feel included and valued; • reading the several books written specifically for siblings of infants in the nursery can be informative and supportive. however, many parents find success in creating a simple, custom-made book for the sibling by incorporating photos of the family, the home, the future nursery, and the infant, with the appropriately simple, matter-of-fact language and names of all family members; and • scrapbooking, which has been successful in a number of nurseries, may translate well into books that siblings can treasure. one nursery (recently awarded the nidcap nursery assessment and certification award ) provides a large, homelike kitchen and dining area, in which the family can cook and share meals together with their growing and developing infant. a mother emphasized over and over again that during this time the family really was together! in nurseries with sufficient numbers, evening “sibling club” meetings can provide peer support and a chance to learn more about their baby brother or sister. some nurseries have volunteers who provide recreational evenings for siblings. in one successful group, siblings were given baby dolls to take home. they practiced washing their hands before kissing the doll on the back of the head and on their toes, (with the hope of limiting viral transfer in the future). the brothers and sisters took pride in siblings in the nicu a new challenge for family-focused developmental care developmental observer • 2016 • 9 showing their parents that they knew the safe way to give their babies kisses. this issue was discussed with a parent whose child had a complex surgical problem and was hospitalized for many months. she shared with me a wonderful idea for a baby going home with a gastrostomy tube. she sewed an old tube onto the appropriate spot on a baby doll with a fabric tummy. this helped to educate the siblings about what to expect, and then became the infants favorite doll! this mother also emphasized the importance of giving the siblings a chance to ask about their worries, some of which were unanticipated. for example, one of her children asked her one day “are you coming home from the hospital?” after all, the baby had stayed there for months, so this child did not assume that people always came home from the hospital. this family also found it helpful to select a few routines that were sacred and were continued over time, such as picking her older child up from school which provided a special one-onone time for the mother and child. over time, with increasingly supportive nicu design and policy, there will be fewer periods of separation and more periods when families can be together. families benefit from and appreciate the support of peers and professionals to figure out what works best for their unique situations. the author would like to thank (with her permission) kimberly poling, rn, mother of three, for her wisdom, insights and ideas. references beavis, ag (2007) what about brothers and sisters? helping siblings cope with a new baby brother or sister in the nicu. infant, 3:6. davis, dl, and stein, mr (2004) parenting your premature baby and child: the emotional journey. fulcrum publishing, golden, colorado. about world prematurity day celebrated internationally on november 17th, world prematurity day (wpd) acknowledges the journeys of preterm infants and their families as well as raises awareness of the challenges faced by children born preterm and their families. purple is the symbolic color of wpd representing sensitivity and individuality, two of the characteristics of the premature infant. please join us in honor of world prematurity day 2016 the nidcap federation international (nfi) invites you to pay tribute to newborns, and to their families, nursery staff and hospitals around the world who provide essential nidcap care. a popular way to spread the word is through the purple illumination of landmarks in your communities and the purple illumination of hospital websites. the national nidcap training center in boston, massachusetts has arranged for the lighting of the zakim bridge which is traversed by tens of thousands of people every day, and the nfi hopes that each training center will arrange for a similar marking of the day whether it be the lighting of a bridge, a government building, your hospital’s website, your nicu’s webpage, or your community’s local newspaper (print or electronic version). please consider contacting the programs in your communities that can execute such “illuminations”. other suggestions for celebrating the day: • send the nfi’s wpd information sheet to your local news agencies to inspire a story about preterm birth; • sponsor activities for the parents of preemies in your newborn intensive care units and/or your communities; • coordinate an educational workshop for your nicu staff on the sensitivities and individuality of preterm infants; • promote your activities using the nfi’s poster template found on the nfi’s wpd page. • share your wpd activities via your own social media and share on the nfi’s social media: we encourage you to mark world prematurity day in your own special way and to share these ideas with us so that we may help broaden nidcap’s global reach. nfi celebrates world prematurity day november 17, 2016 http://nidcap.org/wp-content/uploads/2016/09/world-prematurity-day-2016-nfi-info-sheet.pdf http://nidcap.org/en/nfi-news/world-prematurity-day-2016/ mailto:shareyourstory@nidcap.org 10 • 2016 • developmental observer the infant behavioral assessment and intervention program, llc, (ibaip®) rodd hedlund, med “what happens during the first months and years of life matters a lot, not because this period of development provides an indelible blue print for adult well-being, but because it sets either a sturdy or fragile stage for what follows.” 1 p.5 neurobehavioral characteristics of the preterm infant many infants born prematurely or with disabilities, once discharged from the hospital newborn intensive care nursery (nicn), continue to lack a well-organized central nervous system which results in: less control of sleep, arousal, alerting;3,4,5 less attentiveness;6,7 less smiling and positive affect;8 greater fussiness and irritability;9,10 and gaze aversion during early social interactions.6,7,11,12 because many of these infants lack the physiological control to respond to stimuli appropriately or predictably, their overall behavior is highly disorganized.7,13 they are often unable to effectively utilize self-regulatory behaviors that normally support the typically developing infant to progress on to higher developmental tasks.14,15 these infants also fail to provide predictable, clear behavioral cues that assist parents to respond in a manner that will produce organized responses in their baby and support their infant’s self-regulatory efforts and emerging neurobehavioral and developmental competence.3,14,15,16 parental response to the infant caregivers are naturally imbued with a desire for reciprocal, responsive interactions and seem to be biologically programmed for normal newborn behavior.17 a substantial body of research, however, suggests that parents of infants born prematurely and/ or with disabilities show continuing anxiety and low confidence in their caregiving competence, at least during the first year of their infant’s life.18 parents may be frustrated or feel tremendous guilt in response to the infant’s disorganized behavior;24 may be frightened by the neurophysiological sensitivity of their infant;25 may be hesitant to interact with their fragile baby;26 or may experience emotional, physical, and financial stresses which place the disorganized infant at high risk for child abuse and neglect.27,28,29 researchers have observed that parents worked harder to generate smiles, attention, and contented vocalizations.30,31 however, the parents’ efforts were often counterproductive and frequently elicited stress in their babies. parents should be supported to learn to sublimate the natural tendency to “try harder” when the infant demonstrates a hypoactive or stress related response to their stimulation.32-33 an infant’s poor responsiveness, difficult temperament and diminished adaptability have been found to contribute to parental levels of stress even more so than an altered rate of development.12,23 the impact of the infant’s behaviors upon the parent, as well as the parent’s sensitivity to reading the infant’s cues, has received increasing attention in the literature. research over the past thirty years has revealed the central role of the parent’s responsiveness to the infant’s signals in mediating infant cognitive and linguistic development, as well as infant sociability.36-42 with the recognition of the critical role social interactions play in the development of the child, as well as the impact that the infant’s characteristics have on the caregiver, a new approach in supporting mutually satisfying parent-infant interactions is most desperately warranted. parents often times need guided support to: 1) observe their infant and trust their own observations,22,24 2) recognize and interpret the often unpredictable behavioral cues expressed by their baby,42 3) provide the neurobehavioral support to their infant that is suggested by the expression of their baby’s cues43,44 and 4) experience pride and joy in their infant while trusting their own importance and effectiveness in parenting their child.3,14 traditional early intervention programs infants who are born prematurely, or at-risk for failures in developmental outcome, require an array of early intervention services throughout their first two to three years of life. there has been an explosion in the creation of “infant stimulation” programs offered via schools and community-based intervention programs.45 the past three decades have seen an increase in both the number of early intervention professionals involved, and the number of programs aimed at optimizing developmental recovery, following newborn hospitalization.17 early intervention services, whether they be homeor centerbased community programs, continue to take a stimulus/environmental deprivation approach to intervention, helping the child to “catch up” by introducing her to various modes of sensory stimulation and instruction in age-appropriate developmental skills; often guided by the developmental assessment that is currently utilized at their agency.45-48 this “catch-up” approach is inappropriate or possibly harmful for these infants, as they may not be stabilized, at a neurophysiological level, that would allow them to effectively process the sensory input offered to them.5,6,8 as blackburn states: “stimulation that is too complex or intense or inappropriately timed in terms of infant state threshold, maturity, or physiologic status can be as harmful as the lack of stimulation” 11p.78 obviously, infants must be provided with opportunities to be engaged by, and engaged in social/environmental interactions to continue their growth and development. these interactions, however, must be graded to each individual infant’s neurophysiological, behavioral and developmental agenda, as well as her regulatory competence.5,13,14,15,17 developmental observer • 2016 • 11 campbell,49 as well as others,43,44 have described the general insensitivity of early interventionists to the bio-behavioral state of children with disabilities. campbell observed that early intervention professionals involved with classroom programming are often inattentive to the child’s readiness for interaction. further, when the child is presented with a developmental task, the effect is more often a response of disengagement or stress (e.g., turning away; arching; turning pale; and/or moving from an alert state to fussing or crying) than of engagement or approach behaviors (e.g., looking at, or reaching for the presented stimulus).14,43,44 this in turn, leads to a program environment that does nothing to enhance parent-infant interactions or the infant’s feeling of competence. nor does it provide opportunities for the infant to positively experience her effects upon the environment and learn from these experiences.50-52 rethinking traditional early intervention guralnick53 and others54-56 have concluded that early intervention programs that were initiated within the first 12 months, following the birth of a premature infant, with the goals of fostering sensitive parent-infant interactions and infant neurobehavioral development and organization, have the greatest impact on improvement in developmental outcomes. early intervention and health care professionals in the community and/or in hospital-based infant follow-up programs, infant pediatric chronic care settings, and/or their equivalents, need additional training to support the infant’s neurobehavioral and physiological capacity within the context of developmental assessment, intervention, caregiving and social interaction.42-44 this means training these professionals to learn to: 1) recognize and interpret the unpredictable behavioral cues expressed by these infants; 2) facilitate and validate parental perceptions of the behavioral cues of their baby; 3) present and modulate stimulation in response to the infant’s individual neurobehavioral and physiologic status; 4) provide the infant with neurobehavioral support that is attuned to the infant’s request for such; and 5) translate the infant’s behavioral communication system into the development of a supportive neurobehavioral assessment, intervention, and caregiving plan.42,44,50,54 as als states: “support and neurobehavioral intervention cannot end when the infant is discharged from the hospital nicu, but must systematically link families and infants to sound models of community-based supports that build on the neurobehavioral care and intervention that was provided in the nicu.” 17, p. 353 integrating theory into practice: neurobehavioral assessment and intervention new assessment and intervention approaches for infants born with very low/extremely low birth weight or disabilities should incorporate the new directions in service content and delivery that have been called for by those who have been developing and studying direct services over the past years.53-59 these researchers have refocused our attention upon: 1. the synactive theory of newborn behavioral organization and development60-62 (synaction n., or synactive adj. [from the greek syn “together” and the latin actio “action,” resulting in “together in action”]) is the foundation of the assessment of preterm infants’ behavior (apib),63,64 and the newborn individualized developmental care and assessment program (nidcap®).57 the synactive theory “proposes that development proceeds through the continuous balancing of approach and avoidance behaviors, yielding a spiral potentiation of continuous intra-organism subsystem interaction and differentiation and organism-environment interaction, aimed at bringing about the increasingly well-differentiated realization of a species-unique developmental agenda.” 60, p. 129 this theory focuses upon the infant’s intra-organism, subsystems of functioning and their continuous interaction with each other and with the environment across time. the four subsystems include the: 1) autonomic, 2) motor, 3) state and attention/interaction, and 4) regulatory. “the infant actively shapes her own environment by selecting information and initiating and eliciting action in others. the environment, in turn constantly provides opportunities and challenges either to be taken or avoided. if the level of input and information is currently appropriate for the infant—so that she maintains balanced and well-regulated behavioral modulation—the infant may effectively take in the information and make it useful for her next developmental step. if on the other hand, the level and/or intensity of the environmental input is currently inappropriate or poorly timed, the infant has strategies available to defend herself against such input.” 60, p129 “the synactive theory is not a temporally hierarchical model, but emphasizes the simultaneity of system differentiation and interplay, and sees this differentiation always in interplay with the environment.” 118, p. 6 through the direct observation of the behavioral repertoire of an infant, one can infer: a) what goals the infant seeks to accomplish; b) what self-regulatory strategies are being employed by the infant to accomplish these goals; c) how effective these strategies are; and d) what co-regulatory supports might be useful to facilitate the infant’s overall development and neurobehavioral organization;3,14,17 as als and duffy postulate “the infant’s behavior provides the best information base from which to be continuously attuned to the infant.” 64 p.154 2. a brain-environment interaction perspective. the white house conference on early childhood development and learning: what new research on the brain tells us about our youngest children,65 has dramatically underscored the critical role that early experience plays in the organization and growth of the evolving brain.66 early interactions have a decisive impact on the architecture of the brain, the nature and extent of adult capacities, and directly effects the formation of dendritic-axonal interconnections.67-69 each of the estimated one trillion total human neurons, once migrated to their respective locations, develop dendritic and axonal interconnections with an average of 100 other cells, yielding a total of about one quintillion synapses.70 although the first synaptic contacts are established as early as seven weeks of age,71 new cortical cells are generated at a low rate up until and beyond 40 weeks, and synapses continue to be establish richly until five years of age and, more slowly, at least until 18 years of age.72 support for infants born prematurely and/or with disabilities must 12 • 2016 • developmental observer combine knowledge of the evolving dynamic brain with knowledge of neurobehavioral developmental progression.3,14,17 3. a parent-infant interaction perspective. the formation of an enduring attachment relationship between parent and infant appears to be directly affected by the mutual social regulation between the partners in the dyad.73,74 “the infant’s sense of security may result from adequate homoeostatic regulation within the caregiving relationship, with the earliest form of “security of attachment” encoded physiologically in the experience of non-disruptive and need-satisfying neurobehavioral regulation of early states.” 75 p.20 it is imperative that parents are supported as they provide the life sustaining nurturance and cherishing of their infant as she progresses along her individual developmental trajectory. the infant “speaks” to them through her behavioral communication system, and they in turn, quite naturally, even intuitively, attempt to respond to her needs and requests for support.74-78 parents of infants born prematurely or with disabilities need help in recognizing and interpreting the unpredictable behavioral cues expressed by their infant as well as guidance in modulating stimulation in response to their infant’s physiological and neurodevelopmental status.79-81 4. a social-interactionist perspective.82,83 dynamic assessment and intervention is based upon vygotsky’s conceptualization of the “zone of proximal development.” (zpd)71 the process of dynamic assessment and intervention82 has been applied to the neurobehavioral approach offered by the synactive model.60-62 vygotsky defined zpd as “the distance between the actual developmental level as determined by independent problem solving, and the level of potential development as determined through problem solving under adult guidance or mediation.”82, p. 86 simply stated, the “floor” of the zpd is what the infant can do on her own; the ceiling is what she can do given a “reasonable” amount of restructuring or facilitation by the adult.85 the zpd is different for each child, varies as a function of context and task, and changes constantly as the child learns new skills.86,87 some infants may require high support and make small gains, whereas other children will learn quickly with minimal assistance. the same child may respond differently to various types of assistance and in various areas of development. the process of dynamic assessment and intervention requires the professional to identify how the infant independently attempts to achieve mastery on a task, and how the infant’s performance can best be facilitated88 through the use of scaffolding techniques;89 the process where the adult continuously adjusts her interactions as a function of the infant’s changing needs for support. the principles of dynamic assessment and intervention can be elegantly applied to supporting the neurobehavioral organization of the infant. from this perspective the zpd is the distance between what the infant can do to stabilize herself or self-regulate (e.g., bringing her hand-to-mouth) when presented with a task during an assessment, intervention, caregiving or social interaction; and what further co-regulatory supports are needed from an adult, to support the infant to accomplish the task (see figure 1). the degree of co-regulatory support may range from low support (e.g., graded positional adjustments to facilitate a tucked midline position) with minimal adult assistance, to high support (e.g., the use of swaddling to maintain this position). the sum total of co-regulatory supports that are offered to the infant may include: conducting an intervention session in a separate room, where light and/or sound levels can be controlled (an environmental consideration), positional adjustments to facilitate a tucked midline position (handling & positioning consideration) and providing a pacifier for the infant to suck on (a cue-matched consideration). in this example, the sum total of co-regulatory support offered to the infant would be three. figure 1. zone of neurobehavioral organization infant’s potential neurobehavioral organization adult co-regulation: degree of co-regulatory support: minimal, low, moderate, high, end the interaction + sum total of co-regulatory support: environment, handling & positioning, cue-matched infant’s current level of neurobehavioral organization levels of neurobehavioral organization: optimal high moderate low minimal adapted from vygotsky’s “zone of proximal development.”82 hedlund r, ibaip©, llc, 2016 developmental observer • 2016 • 13 thus, the task of the professional is to: 1) identify how the infant independently attempts to achieve the “next step” along her developmental and neurobehavioral trajectory; 2) determine what specific self-regulatory strategies the infant currently attempts to employ; 3) ascertain how successful the infant’s self-regulatory efforts are; and 4) discover how the infant’s performance can best be facilitated through the sensitive application (degree and sum total) of co-regulatory support; support that is offered to facilitate the neurobehavioral and developmental competence of the infant.43,44 the infant behavioral assessment and intervention program (ibaip)43 a training and education program for health care and early intervention professionals in the community and/or in hospital-based infant follow-up programs, infant pediatric chronic care settings, and/or their equivalents. “the capacity of the infant to learn requires an alert state, a graded presentation of stimuli, and a sensitivity to feedback signals indicating limits of tolerance” 2 p. 38 the ibaip trains health care and early intervention professionals: to read and interpret the infant’s behavioral communication system. the infant behavioral assessment (iba).90 the iba (figure 2) is a time sampling of 113 communicative behaviors. the behaviors are categorized according to the four subsystems: 26 autonomic/visceral cues, 44 motor responses, 9 state categories, and 34 attention/interaction behaviors. these are organized along a continuum of behavioral responses from approach, to self-regulation, to the expression of stress or disorganization. each of the four subsystems is further divided into a total of 14 sub-categories. the iba and iba training manual 91 assists professionals to read and interpret the infant’s individual “behavioral story,” and to evaluate the infant’s neurobehavioral organization, self-regulatory competence, and needs for co-regulatory support. from this information base, a neurobehavioral narrative is developed (i.e., iba observational report 91) that paints the neurobehavioral and developmental story of the infant, and identifies specific neurobehavioral and developmental goals that the infant is working towards. drawing upon als’60-62 conceptualization of the synactive model, hedlund and tatarka†44,90.91 have further articulated this theoretical construct. the iba identifies four intra-organism subsystems: 1) autonomic, 2) motor, 3) state, and 4) attention/ interaction. the infant may utilize behaviors within each of these four subsystems to: a) engage in the exploration and processing of cognitive and social-emotional information; b) stabilize herself during this process of engagement c) defend herself by momentarily breaking the intensity of the interaction; or d) remove herself from over challenging environmental/social input, by ending the interaction (via behaviors of varying degree of disorganization expressed through one or all four subsystems). three categories of communicative behaviors have been identified as: 1. approach behaviors. these may be interpreted to indicate that the sensory input that is being received by the infant matches her readiness to process and to make sense of the presented information. the infant may be saying “i am actively engaged by, and engaged in, this interaction.” 2. self-regulatory behaviors. these may be interpreted to be behavioral supports that the infant uses to maintain a balanced, relatively stable state across and among all four subsystems or to return to such a state of balance. the infant uses self-regulatory behaviors as a means: a) to concentrate, process, and learn from the stimuli offered to her. for example, the infant is presented with a toy to visually explore. she may call upon a self-regulatory behavior (hand to mouth, or bracing into a supporting surface) to assist her to concentrate on the toy, process the information, and learn from this experience. b) to strive for and interact with a stimulus that may now offer new or increased challenges. “infants are understood as actively striving for their next steps in development, while depending upon “good enough” environments and care to assure progress on their developmental trajectory.” 118 self-regulation, utilized to strive for the next developmental step, assists the infant to continue to maintain a balanced, relatively stable state across and among all four subsystems while simultaneously attending to a more challenging task. for example, the infant is now encouraged to visually track a toy as it is moved from side to side, across her horizontal visual field (a more difficult task). the infant may call upon several self-regulatory strategies within her behavioral repertoire (e.g., she may bring her to hand to mouth to suck on [sucking], brace with her feet into a supporting surface, and hold on to her own clothing with her other hand). she may also seek additional co-regulatory support from the adult in her strivings to interact with a stimulus that may test her current state of neurobehavioral organization and functioning. this should suggest to the intervening professional that the task at hand is challenging and any additional input may cause upset and lead to neurobehavioral disorganization in one or all four subsystems. an additional parameter of the regulatory behaviors is observable in the neurobehavioral efforts, or behavioral “requests,” that are made by the infant to assist her to engage in assessment, intervention, caregiving or social interactions. for example, the infant is placed in supine and the adult presents a colorful toy for her to visually explore and possibly reach for. the infant attempts to bring her hand to her mouth to suck on, as a self-regulatory support. however, after several attempts, it appears that she lacks the necessary energy to maintain her hand in this position; or her efforts to move her hand to her mouth are ineffective, and her efforts may eventually tire her. in the above scenario, the infant appears to be behaviorally “requesting” assistance from the adult to engage in visually exploring the toy. the adult “answers” these requests as she reflects upon what actions to take that will best facilitate the infants desire to look at the toy, paired with the “requested” 14 • 2016 • developmental observer figure 2. the infant behavioral assessment (iba) developmental observer • 2016 • 15 co-regulatory support. several options may be considered based upon the behavioral observation of the infant during the course of this interaction. these may include: 1) gently supporting the infant’s forearm to guide her hand to her mouth to suck upon (cue-matched neurobehavioral consideration); 2) softy holding the infant’s wrist and gently placing and maintaining the infant’s hand to her mouth to suck on; or 3) tenderly rolling the infant from her back, to her side. this may support the midline flexion of the infant’s arms, with her hands now positioned up close to her upper chest and mouth. it may also provide the infant with the opportunity to “discover” that she may use this positional change to grasp and hold on to her own clothing or both of her hands (handling & positioning neurobehavioral consideration). given that the infant has unsuccessfully attempted to bring her hand to her mouth, and it appears that she may be tiring from these efforts, a positional change (3 above) would seem to be in order. gently rolling the infant to her side, decreases the effects of the pull gravity upon her arms and affords her the opportunity to “discover” and practice another self-regulatory support (holding on to her own clothing or hands). these examples of co-regulatory supports may facilitate the infant’s engagement in this social interaction, when her own self-regulatory efforts are not successful or are unsustainable. co-regulation is not the intervening goal; it’s a means to the desired end (the infant’s acquisition or refinement of self-regulation). the trained professional, understanding this qualification, gradually reduces the proffered co-regulatory supports, as the infant learns to integrate these into her own self-regulatory repertoire. this transitional process, from the infant’s acceptance and use of co-regulatory supports, to the integration of self-regulation, provides the infant with the early sensations and experiences of success in her beginning attempts to open up, take in, and process the world around her…and gradually, over time (drawing upon her integrated self-regulatory repertoire), reach out and actively participate in what life has to offer her. c) to console herself, if pushed beyond her sensory threshold, in an attempt to regain a state of neurophysiological subsystem balance and functioning. for example, the intervening adult speaks to the infant, encouraging her, as she visually tracks the toy across her horizontal visual field. this new auditory input (e.g., speaking to the infant) may be offered as a support to encourage the infant to continue with the task. however, it may be too much for her to process, while simultaneously attempting to visually track the toy, and may lead to the expression of stress behaviors or disorganization. the infant may now use self-regulatory strategies (e.g., hand to mouth, sucking, bracing and/or attempts of the tucking of her extremities up close to her body) as a means of consoling or comforting herself, in an effort to bring herself down from an agitated state of fussing or crying. 3. stress behaviors. these behaviors indicate that the sensory input the child is receiving is too intense, too frequent, too long, or too complex. the infant seems to be saying “i need some time out from this interaction,” or “i’m not currently ready for this level of information, at this point in time.” these three categories of behavioral cues reflect both the infant’s response to sensory input and the integrity of the four subsystems. although behaviors are categorized as approach, selfregulatory or stress, their interpretation may vary depending upon the manner in which the infant utilizes them. each behavior may be viewed as part of a continuum. for example, what commonly may be interpreted as a stress or disorganized behavior (e.g., shoulder retraction) may be used as a self-regulatory mechanism by some infants; while other infants may persistently utilize a selfregulatory behavior (e.g., foot bracing) in an increasingly ineffective, frantic manner, and thus may be interpreted as an indicator of stress and disorganization. these postures or patterns of movement may lead to greater disorganization, affecting other subsystems. alternative co-regulatory supports should be considered, (e.g., the intervening professional offers co-regulatory support to assist the infant to move her arms/hands into a flexed, midline position, up close to her body; and supports the infant’s feet with a hand or firm and supple surface to brace up against). in the discussion of the infant’s communication system above, it seems apt to share als’ eloquent description of the “necessary occurrence of stress in all development.” 118, p.6 “an important point in the context of the discussion of stress or disorganization [as well as selfand co-regulation] of the infant is the necessary occurrence of stress in all development. the organism is only transiently in a steady state of balance and self-regulation, since as soon as such a state is achieved, the next developmental agenda becomes possible and, driven by internal neurobehavioral fueling, the balance is opened up…the neurobiological experience of satisfaction and pleasure, when reorganization at a next level of differentiation comes about, appears to be at least part of the driving energy of the developmental process, supporting the sense of integration and balance while providing the base from which the next phase of disequilibrium opens up…the goal appears to be further differentiation and the above-mentioned pleasure and satisfaction that comes about with the accomplishment of differentiation, and thus constitutes another step in the lifelong process of constructing the sense of self…a processbased proposition, requiring confidence in the competence of the developmentally self-constructing infant, as well as the parents and the professionals in the setting.” 118, p.6 for infants to learn about the world around them and the important people in it, they must be provided with opportunities to interact with environmental input that are novel and may be initially challenging for them. the keen, trained eye of the intervening professional will guide her to offer graded experiences that “support the sense of integration and balance while provi ding the base from which the next phase of disequilibrium opens up… the goal appears to be further differentiation and constitutes another step in the lifelong process of constructing the sense of self.” 118, p.6 during the course of an interaction, the professional continuously adjusts her interactions as a function of the infant’s changing needs for facilitation,82,83 while simultaneously supporting the infant along her individualized neurobehavioral and developmental trajectory. 16 • 2016 • developmental observer the ibaip trains health care and early intervention professionals: to provide graded levels of co-regulatory support, to facilitate infant self-regulation during assessment, intervention, caregiving and/or social interactions. “the growth of self-regulation is a corner-stone of early childhood development that cuts across all domains of behaviors.” 1 p.3 researchers have come to recognize the critical role that self-regulatory behaviors play in the infant’s development.35,55,57 these self-regulatory behaviors assist infants to acquire the behavioral, emotional, and cognitive self-control that is essential to competent functioning throughout life.13-15, 76 infants born prematurely and/or with disabilities are often unable to effectively utilize self-regulatory behaviors that normally support the typically developing infant to progress to higher developmental tasks.13,55,76,90 the neurobehavioral curriculum for early intervention (ncei),44 identifies five levels of infant neurobehavioral organization (i.e., optimal, high, moderate, low and minimal) and five corresponding degrees of co-regulatory support (i.e., minimal, low, moderate, high support, and end the interaction [removing the infant from an interaction in which the intensity of the environmental input is currently inappropriate, too complex or poorly timed. in effect, ending the interaction is a co-regulatory support, in situations where the infant becomes disorganized as a result of her introduction to inappropriate sensory input. in this scenario, the adult would end the interaction, and the infant would be comforted and consoled to assist the child to return to a more organized state of functioning]. the five degrees of co-regulatory supports are applied to the following categories: environmental, handling and positioning, and cue-matched neurobehavioral considerations. if the infant’s level of neurobehavioral organization was determined to be high then the degree of co-regulatory support required by the infant would be low; if, on the other hand, the infant’s neurobehavioral organization is low then one would expect the degree of co-regulatory support to be high. another parameter of functioning to be considered, is the sum total of co-regulatory supports that are offered to the infant from one or all three categories of neurobehavioral considerations (e.g., environmental, handling and positioning and cuematched). the sum total and degree of co-regulatory support that facilitates the neurobehavioral organization of the infant, serves as the best information base for assessing the complexity of the infant’s self-regulatory abilities and co-regulatory needs. for example, the infant may appear to be well organized but may require one neurobehavioral strategy (sum total) offered at a minimal degree of co-regulatory support (e.g., the dimming of overhead lights [an environmental consideration]; or gently supporting the infant’s hand to mouth to suck upon [a cue-matched consideration]) to best facilitate the infant’s interactive alert state and support her engagement with a presented toy; supporting the infant to “open up,” take in, process, and learn from this experience. thus, the sum total and degree of co-regulatory support offered to the infant helps to determine at what neurobehavioral level (i.e., optimal, high, moderate, low, minimal) the infant is currently functioning at (see figure 1, p. 12). in addition, the individualized record of neurobehavioral facilitation (irnf)95,96 was developed to chart the sum total and degree of neurobehavioral strategies requested by the infant over time. over the course of assessment and intervention, the sum total and degree of neurobehavioral facilitation is expected to decrease as the infant learns to take on more of a self-regulatory role; with decreasing needs of co-regulatory support.44,90-92 in this way, the irnf opens another window of infant progress that can be measured, articulated and recorded as a neurobehavioral developmental domain, along with the domains of mental, motor and psychological development. the iba, ncei, and irnf provide a curriculum-based and linked approach to neurobehavioral assessment and intervention by: 1) reading the “behavioral story” of the infant; 2) discovering the developmental and neurobehavioral goals that the infant is working towards; and 3) developing specific recommendations that are guided by the sum total and degree of neurobehavioral strategies to be applied in supporting the infant’s own developmental and neurobehavioral agenda.44,90-92 the curriculum components, described above, assists early intervention and health care professionals to offer an individualized neurobehavioral plan to support infants during assessment, intervention, caregiving and social interactions. figure 3 provides an example of a highly skilled ibaip trained physical therapist as she offers co-regulatory support to facilitate the infant’s attempts to interact with the interventionist and proffered toy, while enjoying this interaction and learning from these experiences. as the interaction proceeds, the therapist, intuitively grades the sum total and degree of support that she offers the infant. this sensitive grading of co-regulatory support provides the infant with opportunities to “take-over” this process, as she begins to self-regulate. this transition from co-regulation to self-regulation is thus integrated, over time, into the infant’s behavioral repertoire, as she is engaged by, and engages in, interactions with the environment at large and the people within it. the ibaip trains health care and early intervention professionals: to facilitate and validate parental perceptions of the behavioral cues of their infant. “virtually every aspect of early human development, from the brain’s evolving circuitry to the child’s capacity for empathy, is affected by the environments and experiences that are encountered in a cumulative fashion, beginning early in the prenatal period and extending throughout the early childhood years.” 1 p.6 these early experiences take place in the context of supportive and nurturing relationships between the infant and her parent, and are formed through a process of mutual social regulation between partners in the infantparent dyad.97-99 parental responsiveness to infant communication signals, plays a central role in mediating infant cognitive and linguistic development, as well as infant sociability, and a sense of “security of attachment.”75,100 “the mother’s aliveness and physical management provide an essential psychological and emotional milieu, essential for the baby’s early emotional growth.” 101, p.89 the parent’s aliveness is presented to the infant through their own body. it is from the parent’s arms that the infant experiences their warm body, their breathing in and out, the sound of their developmental observer • 2016 • 17 jane is laid down upon a blanket that has been place on the floor. jane’s arms are positioned out away from her body (airplane). her legs/feet frequently kick up into midair (sitting on air). she moves from alert to diffuse alert states as her gaze briefly alternates between two adults, one sitting off to her left side and a physical therapist sitting directly in front of her. the physical therapist supports foot clasping, bracing and tucking of the lower trunk and extremities, by gently holding jane’s feet together in a flexed position (co-regulation). this in turn, appears to facilitate an interactive alert state (an approach behavior) as jane looks up at the therapist’s face as she softly speaks to jane. jane’s arms, however, continue to lie out away from her body. the therapist continues to support foot clasping, bracing and tucking by gently holding jane’s feet (co-regulation) and brings jane’s hands to midline (co-regulation); as jane holds on to the interventionist’s finger (self-regulation). an interactive alert state is maintained, as she continues to look up at the therapist who softly speaks to her. co-regulatory support of hands to midline continues, however, support of jane’s feet has been discontinued, as jane is now able to foot clasp and brace with her feet against the supporting surface of the floor (self-regulation). an interactive alert state is maintained as jane continues to focus her attention upon the therapist. jane is now introduced to a toy, as the physical therapist continues to support jane’s hands to midline (co-regulation). jane continues holding on to the therapist’s finger (self-regulation) and continues to support her own feet in foot clasp and bracing against the floor (self-regulation). this appears to assist jane to concentrate on the presented toy. an interactive alert state is maintained. the therapist releases support of jane’s right hand, while offering gentle support to jane’s left hand (hands to midline). jane continues to hold on to the therapist’s finger (self-regulation) and supports her own feet in foot clasp and bracing (self-regulation). this appears to assist jane to concentrate on the presented toy and reach up and grasp it. an interactive alert state is maintained. all co-regulatory support has been removed. jane is now able to effectively utilize self-regulatory strategies to visually explore the toy (i.e., hands to midline, holding on to her own clothing, tucking in of her upper and lower trunk and extremities, and foot bracing). these self-regulatory strategies appear to assist her to concentrate on the task at hand. an interactive alert state is maintained. 1 2 3 4 5 6 7 figure 3. application of neurobehavioral supports 18 • 2016 • developmental observer heartbeat, and the assurance that she is safe and loved within the warm comfort of their arms. it is from the arms of the parents that the baby is cared for, and introduced to the important people in her life, and the outside world. “parents and professionals are seen as co-regulators of infants… in the synactive theory’s framework, the mutual co-regulation conceptualization is comprehensive to overall functioning and is seen as biologically based and species specific to humans.” 118, p. 7 heeding the critical importance of the developing parent-infant relationship, holding parents holding their baby 95 was developed to assist professionals to support parents as they continue to explore ways to adjust their interactions to the neurobehavioral, psychological, and developmental needs of their ever changing and growing infant. holding parents holding their baby recognizes and respects the parent’s natural capacity to love and care for their baby,86-97 while simultaneously assisting early intervention and health care professionals in supporting the parent’s engrossment with their child and the child’s neurobiological based expectations for nurturance from the family.3,4,22,102 given the process-oriented perspective of neurobehavioral co-regulation, parent support, and promoting parental confidence in being with, and caring for the infant, is one of the most important goals of the ibaip. organization of the ibaip training and education program training in the infant behavioral assessment and intervention program is offered to special education teachers, physical and occupational therapists, communication disorder specialists, visiting home nurses, pediatricians, psychologists, social workers, infant developmental specialists, or staff in hospital-based infant follow-up programs, infant pediatric chronic care settings, and/or their equivalents. these professionals first receive instruction in the administration of the infant behavioral assessment to ensure the successful implementation of the neurobehavioral curriculum for early intervention. as the applications of neurobehavioral co-regulatory support are based upon the clinical observational skills of the adult, it is imperative that training in all neurobehavioral components of the ibaip have been successfully completed. in addition, clinical experience with newborns or young infants and knowledge of infant development and standardized testing is required. training in the application of co-regulatory supports and related materials is best suited for clinicians who are already skilled in their own pediatric specialty and who are currently providing intervention services to the infant populations identified below. infant populations the ibaip may be implemented with infants from birth through twelve months of age who are medically fragile, high risk, developmentally delayed, neurologically impaired, or drug-/alcohol-exposed. in the case of infants who were born prematurely, the observation is based upon the infant’s corrected or adjusted age (one month corrected age). the ibaip may also be useful with older infants whose neurological impairment or developmental delay suggests associated cns functioning within the birth-totwelve month age range,55,56 due to the mediating influence of the central nervous system in human behavioral responses.57 ibaip training format training in the ibaip combines instruction in the reliable use of the infant behavioral assessment (iba), the neurobehavioral curriculum for early intervention (ncei), the individualized record of neurobehavioral facilitation (irnf) and holding parents holding their baby. organization of the ibaip training98 is described in table 1. evaluation effects a pilot study103 demonstrated the efficacy of ibaip training in amsterdam, the netherlands.99 significant gains (p<.05) were found for both mental (mdi) and psychomotor (pdi) developmental indices on the bsid-ii as well as demonstrating clinically significant differences in neurobehavioral competence in favor of the intervention group. more recently koldewijn and wolf, academic medical center, university of amsterdam, conducted a randomized controlled trial of 176 very low birth weight infants (2004-2007). this study compared the effect of ibaip to standard follow-up care, with respect to infants’ neurobehavioral regulation, psychomotor and cognitive development, the well-being of the parents, and parent-infant interaction.100,101 the children were examined at six, 12 and 24 months of ca (10–12). two tertiary-level hospitals with neonatal or newborn intensive care unit facilities and five general hospitals in amsterdam, the netherlands, participated in the study. all the physical therapists that provided ibaip intervention to infants and families in the experimental group for both the pilot study, and the studies reviewed below, were trained and certified in the ibaip by hedlund. between 2009 and 2011, a follow-up study was performed to evaluate the effects of the ibaip at six months to five and a half years, ca (see ibaip follow-up results, table 2). reliability, sensitivity & responsiveness of the infant behavioral assessment (iba)113 koldewijn and her colleagues113 investigated the reliability, sensitivity and responsiveness of the iba to evaluate neurobehavioral organization in very preterm infants. videotaped assessments of very preterm infants participating in a recent trial served to evaluate a standardized iba observation. inter-rater reliability was based on 40 videos scored by two independent observers, using percentage agreement and weighted kappa’s. sensitivity was evaluated by comparing the iba results of 169 infants at 35–38 weeks postmenstrual age, dichotomized according to two developmental risk factors. the effect size (es) was calculated between 0 and 6 months corrected age in all intervention and control infants and in subgroups of high-risk intervention and control infants with oxygen dependency > 28 days. results indicated: 1. inter-rater agreement was 93% in the total assessment; 2. kappa agreement was moderate to good in the behavioral categories; and developmental observer • 2016 • 19 3. significant differences were found between groups with or without risk factors. larger differences between ess in the randomized groups with oxygen dependency >28 days than in the total randomized groups reflect the responsiveness of the iba. the authors concluded that the infant behavioral assessment (iba) is a reliable and valid tool to evaluate and support neurobehavioral organization in very preterm infants. satisfactory to good clinical metric characteristics of the iba were found in very preterm born infants. additional validation of the iba in different infant populations, and at different ages is warranted. summary the ibaip is a proven103-113 comprehensive assessment and intervention model which supports the developmental and neurobehavioral integrity of premature infants born with low to extremely low birth weight, or with disabilities. the focus of the ibaip is not “what to teach” (content curricula) but “how to teach and support the infant during assessment, intervention, caregiving or social interactions;” a process oriented approach. by focusing on how to facilitate learning and social interaction, the ibaip adds a critical individualized,78-80 relationship-based,114-117 family-centable 1. organization of ibaip training ibaip pre-conference workshop prior to ibaip workshop i, the ibiap curriculum, training materials and required readings are sent to the ibaip site coordinator for distribution to the ibaip trainees, approximately four months before ibaip workshop i. the ibaip trainer meets with the trainees via a scheduled phone conference, to discuss the trainees’ homework assignments as outlined in the ibaip program guide. ibaip workshop i: five-day ibaip training course the first day of this workshop consists of a half-day lecture followed by a half-day introduction to the iba and the iba operational definitions. during days two-five the trainees are instructed in the administration and implementation of the: infant behavioral assessment (iba), neurobehavioral curriculum for early intervention (ncei), and holding parents holding their baby. written critique of the iba observational report approximately three-months from the completion of workshop i, each trainee sends one iba, and iba observational report to the trainer. the trainer reviews and comments on these submitted materials. a written critique is then sent back to each trainee (usually consisting of six-eight type-written pages). after each trainee has received their written critique, the trainer follows up with a conference call to answer the trainees’ questions with regards to their critique. ibaip workshop ii: four-day ibaip follow-up workshop approximately six months following workshop i, the trainer returns to conduct a follow-up workshop with the trainees. trainees participate in a four-day workshop to check trainee iba inter-rater agreement reliability, the development of the iba observational report, as well as the implementation of the ncei, and holding parents holding their baby. on the fourth day, the trainer reviews the requirements involved in the development of the ibaip case study. ibaip workshop iii: four-day ibaip certification workshop the ibaip trainer returns approximately six months after ibaip workshop ii, to conduct iba inter-rater agreement reliability sessions with the trainees and assess the implementation of the ncei and holding parents holding their baby via review and discussion of their iba observational report. this occurs during the first three days of this workshop. on the fourth day, the trainees meet together with the ibaip trainer to present their ibaip case study. ibaip certification: upon successful completion of all of the ibaip workshops (i-iii and all ibaip homework assignments) the ibaip trainee is certified as an ibaip professional and is granted the right to implement all ibaip assessments, curriculum, and associated training materials in his or her professional practice. hedlund r, ibaip®, llc, 2016 20 • 2016 • developmental observer tered,90-92,101,102 and neurobehavioral dimension3,14,60-62 to early intervention, often lacking in traditional early intervention models. from 1989-1995 over 500 early intervention professionals from 48 early intervention programs, across 24 states were trained in the ibaip. ibaip training and/or training in components of the ibaip have also been conducted in victoria, canada, riyadh, saudi arabia, london, england, throughout the netherlands, and tehran, iran over the course of the past fifteen years. recently, the ibaip has been endorsed by the nidcap federation international (october, 2016). future plans pr jacques sizun, md, service de néonatalogie et réanimation pédiatrique, pôle de la femme, de la mère et de l’enfant, chru brest, france will conduct a multicenter, cluster randomized study with eight nicu follow-up clinics and 340 infants to evaluate the effectiveness of the ibaip. ibaip training of ten physical therapist will begin in the spring of 2017, in brest, france. ibaip training is also scheduled for tehran, iran with eight early intervention and health care professionals to commence in the fall of 2017. table 2. ibaip follow-up results 6 months at six months corrected age (ca) the ibaip improved the infant’s motor development (pdi, bsid), mental development (mdi, bsid), behavioral development (brs, bsid), self-regulatory competence (iba),106 and mother-infant interaction.107 24 months at 24 months ca, the ibaip improved the infant’s motor (pdi, bsid) development.108 additional positive effects of the ibaip intervention included: • the most vulnerable infants profited most from intervention, affecting interactive, behavioral, mental and motor aspects of development: infants with bpd, ga < 28 weeks, abnormal cranial ultrasound, a combination of social and biological risks, male sex, and infants with low educated mother.108 • children that received ibaip intervention needed significantly less paramedical support once discharged home.108 44 months at 44 months ca, the ibaip improved independency in mobility (pedi) and sensory processing (oral/tone; sp-nl).109,110 at 44 months ca, the most vulnerable infants (i.e., infants with: bpd, ga < 28 weeks, abnormal cranial ultrasound, a combination of social and biological risks, male sex, and infants with low educated mothers) profited most from ibaip intervention, effecting interactive, behavioral, mental and motor aspects of development: • children with bpd in the ibaip group showed better modulation relating to body position/movement, better social functioning and less withdrawn behavior; • children born extremely preterm (ept) with a gestational age of < 28 weeks, in the ibaip group had better executive functioning, better modulation of visual input on emotions and activity level, and were less emotionally reactive; • boys profited extra from the ibaip in relation to self-care and social functioning; • vlbw children in the ibaip group born to a low educated mother demonstrated better word comprehension; and • for children with abnormal neonatal cerebral ultrasound findings, the ibaip group was found to be particularly effective with respect to modulation relating to body position/movement. 5.5 years at 5.5 years ca, the ibaip leads to improvement in intelligence, ball skills and visual motor integration.111 5.5 years at 5.5 years ca, the ibaip leads to long-term developmental improvements in very preterm infants, especially infants with bronchopulmonary dysplasia. infants with bronchopulmonary dysplasia showed significant longitudinal intervention effects for cognitive (0.7 sd; p = 0.019) and motor (0.9 sd; p = 0.026) outcomes.112 hedlund r, ibaip®, llc, 2016 developmental observer • 2016 • 21 for additional information on the ibaip please visit: www.ibaip.org or contact: rhedlund@ibaip.org. references 1 shonkoff jp & philips da. from neurons to neighborhoods: the science of early childhood development. 2000. washington dc: national academy press. 2 papousek h & papousek m. beyond emotional bonding: the role of preverbal communication in mental growth and health. infant mental health journal. 1992; 13 (1): 43-53. 3 als h. earliest intervention for preterm infants in the newborn intensive care unit. in mj guralnick (ed.) the effectiveness of early intervention. 1997: 47-76. baltimore: paul brooks. 4 goldberg,s, brachfeld s & devitto b. feeding, fussing, and playing: parent-infant interaction in the first year as a function of prematurity and prenatal problems. in t. field, s. goldberg, d. stern, & a. sostek (eds.), high-risk infants and children: adult and peer interactions. 1980. new york: academic press. 5 field t. interaction patterns of high-risk and normal infants. in t. field, a. sostek, s.goldberg, & h. h. shuman (eds.), infants born at risk. 1979b. new york: spectrum. 6 field tm. high risk infants “have less fun” during early interactions. topics in early childhood special education. 1983; 3 (1):77-87. 7 field t. effects of early separation, interactive deficits, and experimental manipulations on infant-mother face-to-face interaction. child development. 1977; 48: 763-771. 8 als h. neurobehavioral development of the preterm infant. in a. a. farnoff & r. j. martin (eds.), neonatal-perinatal medicine. 1997; (2): 964-989. st. louis: mosby. 9 crnic k, ragozin a, greenberg m, robinson n & robinson n. social interaction and developmental competence of preterm and full-term infants during the first year of life. child development. 1983; 54:1199-1210. 10 gorski, p., davison, m., & brazelton, t. (1979). stages of behavioral organization in the high-risk neonate: theoretical and clinical considerations. seminars in perinatology.1979;3:61-73. 11 blackburn s. fostering behavioral development of high-risk infants. journal of obstetrics and gynecologic neonatal nursing, 1983.may/june (supplement), 76-84. 12 beckman p thiele j, pokorni j, & balzer-martin l. stability of behavioral characteristics in preterm infants. topics in early childhood special education. 1986;6 (2): 57-67. 13 bronson, mb. supporting self-regulation in infants and toddlers. in m.b. bronson (ed.), self-regulation in early childhood: nature and nurture. 2000: 167-197. new york: guilford press. 14 als h. reading the premature infant. in goldson e. (ed.), developmental interventions in the neonatal intensive care nursery. 1999: 18-85. new york: oxford university press. 15 als h, duffy f, mcanulty g & badian n. continuity of neurobehavioral functioning in preterm and fullterm newborns. in m. bornstein & n. krasnegor (eds.), continuity in development. 1988. hillsdale, nj: lawrence erlbaum. 16 frodi, a.m, lamb me, leavitt la., donovan wi, neff c & sherry d. fathers’ and mothers’ responses to the faces and cries of normal and premature infants. developmental psychology, 1978;14: 490-498. 17 als h. individualized, family-focused developmental care for the very low birthweight preterm infant in the nicu. in freidman and m. sigman (eds.), the psychological development of low birthweight children. 1992; 341-388. norwood, nj: ablex. 18 barnard k., bee h & hammond m. developmental changes in maternal interactions with term and preterm infants. infant behavior and development. 1984; 7: 101-113. 19 minde k., whitelaw a, brown j & fitzhardinge p. effect of neonatal complications in premature infants on early parent-child interactions. developmental medicine and child neurology. 1983;25: 763-777. 20 brown jv, larossa,mm, aylward gp, davis dj, rutherford pk. & bakeman, r. nurserybased intervention with prematurely born babies and their mothers: are there effects? journal of pediatrics. 1980; 97: 487-491. 21 brown, jm.& bakeman r. relationships of human mothers with their infants during the first year of life: effect of prematurity. in r. w. bell & w. p. smotherman (eds.), maternal influences and early behavior. 1979. new york: spectrum. 22 mccollum, j & stayton v. infant/parent interaction: studies and intervention guidelines based on the siai model. journal of the division for early childhood, 1985; 9: 125-135. 23 bendell, d., goldberg, m., urbano, m., urbano, r., & bauer, c. differential impact of parenting sick infants. infant mental health journal. 1987; 8: 28-36. 24 yoos l. applying research in practice: parenting the premature infant. applied nursing research. 1989;2 1: 30-34. 25 kraus kj. fostering family integrity. in m. j. craft & j. r. denehy (eds.), nursing interventions for parents and children. 1990:43-52.wb saunders company. 26 vandell dl & wilson ks. infants’ interactions with mother, sibling, and peer: contrasts and relations between interaction systems. child development. 1987; 58: 176-186. 27 field t. interaction patterns of high-risk and normal infants. in t. field, a. sostek, s. goldberg, & h. h. shuman (eds.), infants born at risk. 1979b. new york: spectrum. 28 egeland, b., & sroufe, l. a. developmental sequelae of maltreatment in infancy. in r. rizley & d. cicchetti (eds.), developmental perspectives in child maltreatment. 1981:77-92, san francisco: jossey-bass. 29 elmer e& gregg d. developmental characteristics of abused children. pediatrics. 1967; 40: 596-602. 30 field t. games parents play with normal and high-risk infants. child psychiatry and human development. 1979a;10: 41-48. 31 perlman jm. neurobehavioral deficits in premature graduates of intensive care: potential medical and neonatal environmental risk factors. pediatrics. 2001; 108 (6): 1339-1348. 32 kelly j. the early social environment provided by mothers in a high social risk group: a precursor to children’s later school adaptation. child study journal. 1996, december. 33 kelly j & barnard k. assessment of parent-child interaction: implications for early intervention. in s. meisels & j.p. shonkoff (eds.), the handbook of early intervention. 2000: 258289. cambridge, ma: university of cambridge press. 34 degangi ga. assessment of sensory, emotional, and attentional problems in regulatory disordered infants: part 1. infants and young children. 1991;3 (3): 1-8. 35 greenspan s & wieder s. emotion and interaction: keys to the development of intelligence, sense of self, and social capacities. in s. greenspan and s. wieder (eds.), the child with special needs: encouraging intellectual and emotional growth. 1998: 106-119. reading, ma: perseus books. 36 greenberg m & crnic k. longitudinal predictors of developmental status and social interaction in premature and full-term infants at age two. child development, 1988; 59: 554-570. 37 hunt jv, tooley wh & cooper ba. further investigations of intellectual status at age 8 years: i. long-term consequences into adulthood. ii. neonatal predictors. in s. l. friedman & m. d. sigman (eds.), advances in applied developmental psychology, the psychological development of low birthweight children. 1992. norwood, nj: ablex, 6, 315-337. 38 luciana m, lindeke l, georgrieff mk, mills mm & nelson ca. neurobehavioral evidence for working-memory deficits in school-aged children with histories of prematurity. developmental medicine and child neurology. 1999; 41: 521-533. 39 bretherton i. pouring new wine into old bottles: the social self as internal working model. in m. r. gunnar & l. a. sroufe (e’s.), self processes and development. 1991: 1-44. hillsdale, n.j.: lawrence erlbaum. 40 ainsworth mds & bell sm. mother and infant interaction and the development of competence. in k. j. connolly & j. s. bruner (eds.), the growth of competence. 1974. new york: academic press. 41 ainsworth mds, bell s & stayton p. infant-mother attachment and social development: ‘socialization’ as a product of a reciprocal responsiveness to signals. in m. richards (ed.), the integration of a child into a social world. 1974. london: cambridge university press. 42 hedlund r with notari-syverson a. holding parents holding their baby. 1997. publication available from r hedlund, lawrence, kansas, usa; rhedlund@ibaip.org; www.ibaip.org. 43 hedlund r. infant behavioral assessment and intervention program. handout. 1998. rhedlund@ibaip.org; www.ibaip.org. 44 hedlund r. neurobehavioral curriculum for early intervention.1998. publication available from r. hedlund,lawrence, kansas, usa; rhedlund@ibaip.org; www.ibaip.org. 45 guralnick m j. the effectiveness of early intervention for children with cognitive and general developmental delays. in m. j. guralnick (ed.), the effectiveness of early intervention. 1997: 115-173 baltimore md: paul h.brooks. 46 bennett fc. recent advance in developmental intervention for biologically vulnerable infants. infants and young children. 1990; 3 (1): 33-40. 47 brooks-gunn j, berlin lj & fuligni as. early childhood intervention programs: what about the family? in j. p.shonkoff & s. j. meisels, (eds.), handbook of early childhood intervention. 2000: 549-587. new york: cambridge university press. 48 brazelton tb, o’brien m & brandt ka. combining relationships and development: applying touchpoints to individual and community practices. infants and young children. 1997; 10 (1):74-84. 49 campbell p. dysfunction in posture and movement in individuals with profound disabilities: issues and practices. in f. brown and d. lehr (eds.), persons with profound disabilities: issues and practices. 1991. baltimore: paul brookes. 50 blanchard y & mouradian l. integrating neurobehavioral concepts into early intervention eligibility evaluation. infants and young children. 2000; 13 (2): 41-50. 51 nurcombe b, howell dc, rauh va., teti dm, ruoff p & brennan j. an intervention program for mothers of low birth-weight infants: preliminary results. journal of the american academy of child psychiatry.1984; 23: 319-325. 52 brazelton, tb & greenspan si. the irreducible needs of children: what every child must have to grow, learn, and flourish. 2000. cambridge, ma. 53 guralnick mj. preventive interventions for preterm children: effectiveness and developmental mechanisms. journal of developmental behavioral pediatrics. 2012; 33: 352–64. 54 shonkoff, j. p & philips, da. promoting healthy development through intervention. in j. p. shonkoff & d. a. philips (eds.), from neurons to neighborhoods: the science of early childhood development 2000a: 93-123. washington d. c.: national academy press. 55 shonkoff jp & philips da. acquiring self-regulation. in j. p. shonkoff & d. a. philips (eds.), from neurons to neighborhoods: the science of early childhood development, 2000b: 93-123. washington d. c.: national academy press. 56 gomby ds, culross pl & behrman re. home visiting: recent program evaluations— analysis and recommendations. the future of children: long-term outcomes of early childhood programs. 1999; 5 (3): 6-24. http://www.ibaip.org http://www.ibaip.org http://www.ibaip.org 22 • 2016 • developmental observer 57 als, h. program guide--newborn individualized developmental care and assessment program (nidcap): an education and training program for health care professionals. 1986, rev.2013. boston: nidcap federation international. 58 westrup b. family-centered developmentally supportive care. neoreviews. 2014; 15(8): e1e11. epub. 59 van wassenaer-leemhuis ag, jeukens-visser m, van hus jwp, meijssen d, wolf m-j, kok jh, nollet f & koldewijn k. developmental medicine and child neurology. 2016; 58(4): 67-73. doi: 10.1111/dmon.13049. 60 als, h. toward a synactive theory of development: promise for the assessment of infant individuality. infant mental health journal. 1982; 3:229-243. 61 als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of the neurobehavioral development of the premature infant and his parents in the environment of the neonatal intensive care unit. physical & occupational therapy in pediatrics. 1986; 6 (3/4): 3-55. 62 als h. the unfolding of behavioral organization in the face of a biological violation. in e. z. tronick (ed.), social interchange in infancy: affect, cognition, and communication. 1982. baltimore: university park press. 63 als h., lester b., tronick, e., & brazelton, t. manual for the assessment of preterm infants’ behavior (apib). in h. fitzgerald, b. lester, & m. yogman (eds.), theory and research in behavioral pediatrics: vol. 1. 1982: 65-132. new york: plenum press. 64 als h & duffy f. the behavior of the premature infant: a theoretical framework for a systematic assessment. in t. brazelton & b. lester (eds.) new approaches to developmental screening of infants. 1983:153-171. elsevier science publishing co. 65 white house conference on early childhood development and learning: what research on the brain tells us about our youngest children, april 17, 1997. 66 shore & rim. rethinking the brain: new insights into early development. 1997 families and work institute. 67 chugani ht. neurogimaging of developmental non-linearity and developmental pathologies. in r. w. thatcher, g.r. lyon, j. rumsey, & n. krasnegor (eds.), developmental neuroimaging: mapping the development of brain and behavior. 1997: 235-257. san diego: academic press. 68 rakic p. development of the cerebral cortex in human and nonhuman primates. in m. lewis (ed.), child and adolescent psychiatry: a comprehensive textbook (2nd edition). 1996: 9-30. ny: williams & wilkins. 69 rakic p, bourgeois j & goldman-rakic ps. synaptic development of the cerebral cortex: implications for learning, memory, and mental illness. in j. van pelt, m. a. corner, h. b. m. uylings & p. h. lopes da silva (e’s.), the self-organizing brain: from growth cones to functional networks.1994:236-268. elsevier science bv. 70 martin-pena a, acebes a, rodriguez jr, sorribes a, de polavieja gg, fernandez-funez p, ferrus a. age-independent synaptogenesis by phosphoinositide 3 kinase. journal of neuroscience. 2006; 26:10199–10208.[pubmed]. 71 larroche jc. the marginal layer in the neocortex of a 7 week-old human embryo. a light and electron microscopic study. anatomy and embryology. august, 1981:162 (3):301-312. 72 duffy fh, jones kh, mcanulty gb & albert ms. spectral coherence in normal adults: unrestricted principal components analysis–relation of factors to age, gender, and neuropsychologic data. clinical electroencephalography.1995; 26 (1): 30-46. 73 laucht m, esser g & schmidt mh. differential development of infants at risk for psychopathology: the moderating role of early maternal responsivity. developmental medicine and child neurology. 2001; 43: 292-300. 74 papousek h & papousek m. intuitive parenting. in m. h.bornstein (ed.), handbook of parenting—2nd edition. 2005: 183-203. new jersey: lawrence erlbaum associates. 75 lyons-ruth k & zeanah ch. the family context of infant mental health: i. affective development in the primary caregiving relationship. in c. h. zeanah, jr. (ed.), handbook of infant mental health. 1993:14-37. new york: guilford pres. 76 kopp cb. self-regulation in children. in j.j. smelser and p. b. baltes (eds.), international encyclopedia of the social and behavioral sciences. 2000. oxford, uk: elsevier. 77 greenspan s & wieder s. emotion and interaction: keys to the development of intelligence, sense of self, and social capacities. in s. greenspan and s. wieder (eds), the child with special needs: encouraging intellectual and emotional growth. 1998: 106-119. teaching, ma: perseus books. 78 hedlund r. the infant behavioral assessment and intervention program: supporting the neurobehavioral organization and development of infants with disabilities. h0244b50020, usde, 1995-2001. final report, h0244b50020, usde, submitted to the us department of education, 2001. 79 world health organization. the importance of caregiver-child interactions for the survival and healthy development of young children: a review. 2004. internet communication: isbn 92 4 159134x 80 hedlund r. fostering positive social interactions between parents and infants. teaching exceptional children, 1989b; 21 (4): 45-48. 81 hedlund r & notari-syverson a. holding parents holding their baby. 1997. publication available from ibaip international training center, lawrence, kansas usa; rhedlund@ ibaip.org. 82 vygotsky l. mind in society: the development of higher, psychological processes. 1930/1960/1978. cambridge, ma: harvard university press. 83 vygotsky l. thought and language. (a. kosulin, ed. and trans.) 1934/1986. cambridge: mit press. 84 wood d, brunner j & ross g. (1976). the role of tutoring in problem solving. journal of child psychology and psychiatry. 1976; 17: 89-100. 85 wertsch jv & rogoff, b. editor’s notes. in b. rogoff & j. v. wertsch (eds.), children’s learning in the “zone of proximal development.” 1984:1-6. san francisco, ca: jossey-bass. 86 bodrova e & leong dj. tools of the mind: the vygotskian approach to early childhood education. 1996. englewood cliffs, nj: prentice-hall. 87 pressley m, hogan k, wharton-mcdonald r & mistretta j. the challenges of instructional scaffolding: the challenges of instruction that supports student thinking. learning disabilities research and practice. 1996; 11 (3): 138-146. 88 lidz cs, bond ls & dissinger l. (1991). consistency of mother-child interaction using the mediated learning experience rating scale. special services in the schools. 1991;6:145-165. 89 wood d, bruner js & ross g. the role of tutoring in problem-solving. journal of child psychology and psychiatry.1976; 17: 89-100. 90 hedlund r & tatark. infant behavioral assessment. 2005. publication available from r hedlund, lawrence, kansas usa; rhedlund@ibaip.org; www.ibaip.org 91 hedlund r & tatark. iba training manual. 2005. publication available from r hedlund, lawrence, kansas usa; rhedlund@ibaip.org; www.ibaip.org. 92 hedlund r. ibaip program guide. publication available from ibaip international training center, lawrence, kansas usa; rhedlund@ibaip.org 93 als h. manual for the naturalistic observation of newborn behavior (preterm and fullterm infants) & the nidcap scan sheet. 1981. children’s hospital, boston, ma 02115. 94 neisworth jt, bagnato s & salvia j. neurobehavioral markers for early regulatory disorders. infants and young children. 1995; 8 (1): 8-17. 95 hedlund r. individualized record of neurobehavioral facilitation. 1998f. publication available from r. hedlund, lawrence, kansas, usa; rhedlund@ibaip.org; www.ibaip.org 96 losardo a & notari-syverson a. dynamic assessment. in a. losardo & a. notari-syverson (eds.), alternative approaches to assessing young children. 2001: 117-148. baltimore: paul brooks. 97 tronick, e. social interchange in infancy: affect, cognition, and communication. 1982. baltimore, md: university park press. 98 tronick e & cohn, j. infant-mother face-to-face interaction: age and gender differences in coordination and the occurrence of miscoordination. child development. 1989; 60: 85-92. 99 tronick, e. z., & gianino, a. interactive mismatch and repair: challenges to the coping infant. zero to three. 1986; 6 (3): 1-6. 100 bowlby j. attachment. 1969. new york, new york: basic books. 101 winnicott, dw. the child, the family, and the outside world. 1978. new york: addison wesley. 102 winnicott dw. environmental health in infancy. in c. winnicott, r. shepherd, & m. davis (eds.), babies and their mothers. 1968/1987. new york: addison-wesley. 103 koldewijn, k, wolf, mj, van wassenaer, a, beelen, a, de groot, ijm. & hedlund, r. the infant behavioral assessment and intervention program to support preterm infants after hospital discharge: a pilot study. developmental medicine & child neurology. 2005; 47: 105112. 104 wolf mj, koldewijn k, beelen a, smit b, hedlund r & de groot,i. neurobehavioral and developmental profile of very low birthweight preterm infants in early infancy. acta paediatr. 2002; 91: 930-938. 105 wolf mj, koldewijn k, meijssen d, van wassenaer a, beelen a, hedlund r, van baar a,nollet f & kok,j. outline of a ramdomized controlled trial on: a neurobehavioral intervention program for vlbw infants and their parents after discharge from hospital. 2005. poster presentation, infant development in neonatal intensive care, london. 106 koldewijn k, wolf mj, van wassenaer a, meijssen d, van sonderen l, beelen a, van baar a, nollet f & kok j. the infant behavioral assessment and intervention program for very low birth weight infants at 6 months corrected age. the journal of pediatrics. 2009; 154: 33-38. 107 meijssen d, wolf mj, koldewijn k, houtzager ba, van wassenaer a, tronick e, kok j, van baar a. the effect of the infant behavioral assessment and intervention program on mother-infant interaction after very preterm birth. journal of child psychology and psychiatry. 2010; 5111: 1287-95. 108 koldewijn k, van wassenaer a, wolf mj, meijssen d, houtzager b, beelen a, kok j & nollet f. effect of the infant behavioral assessment and intervention program in very low birth weight infants at 24 months corrected age. the journal of pediatrics. 2010; 156: 359365. 109 verkerk g, jeukens-visser m, koldewijn k, houtzager b, van wassenaer a, kok jh & nollet f. the infant behavioral assessment and intervention program improves functional skills in infants born preterm at the age of 44 months. world congress of physiotherapists 2011. research report poster presentation, amsterdam, the netherlands. 110 verkerk g, jeukens-visser m, koldewijn k, houtzager b, van wassenaer a, kok jh & nollet f. infant behavioral assessment and intervention program in very low birthweight infants improves independency in mobility at preschool age. the journal of pediatrics. 2011;159: 933-938. http://www.ncbi.nlm.nih.gov/pubmed/17021175 mailto:rhedlund@ibaip.org mailto:rhedlund@ibaip.org http://www.ibaip.org http://www.ibaip.org mailto:rhedlund@ibaip.org http://www.ibaip.org developmental observer • 2016 • 23 111 van hus jwp, jeukens-visser m, koldewijn k, geldof cja, kok jh, nollet frans & van wassenaer-leemhuis,ag. sustained developmental effects of the infant behavioral assessment and intervention program in very low birth weight infants at 5.5 years corrected age. journal of pediatrics. 2013; jun;162(6):1112-9. epub 2013 jan 11. 112 van hus jwp, jeukens-visser m, koldewijn k, holmarr r, kok jh, nollet f & van wassenaerleemhuis ag. early intervention leads to long-term developmental improvements in very preterm infants, especially with infants with bronchopulmonary dysplasia. acta pædiatrica. 2016; 105:773-781. 113 koldewijn k, van hus j, van wassenaer a, jeuken-visser m, kok j, nollet f & wolf mj. the reliability, sensitivity and responsiveness of the infant behavioral assessment (iba) in very preterm infants. acta paediatrica. 2011; foundation acta paediatrica; 1-6, pubmed. 114 als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology.1997; 21 (3): 178-189. 115 gilkerson l & als h. role of reflective process in the implementation of developmentally supportive care in the newborn intensive care nursery. infants and young children. 1995; 7(4): 20-28. 116 hedlund re. reflection as an individual and shared experience. presented at the 20th annual nidcap trainers meeting, october 5, 2009: 1-22. 117 hedlund re. supporting and sustaining reflective practice. developmental observer. 2009; 3(2): 1-5. nidcap federation international. 118 als h. guidelines and suggestions for nidcap trainees, nidcap professionals, nidcap trainers-in-training, nidcap trainers and master trainers, as well as center directors. 1990, 1992, 1993, 1998, 2008, 2013:2-18. ©nidcap federation international, 2015. 24 • 2016 • developmental observer t he nfi wishes to express sincere appreciation to kathleen vandenberg, phd for her steadfast support and participation as a director of the board since its incorporation in 2001. kathy was a very early adopter of the nidcap approach to care having been apib certified in 1980 before becoming a nidcap professional in 1986, a nidcap trainer in 1988 and a master nidcap trainer in 2004. dr. vandenberg has demonstrated her dedication to infants, families and staff through over forty years as a clinician, researcher and educator. she was co-investigator for a number of the seminal nidcap studies and has been the director and trainer/ master trainer in three different centers in california. she has authored individualized developmental care for high risk newborns in the nicu: a practice guideline and coming home: transitions from nicu to home in addition to nearly 50 peer reviewed publications. currently kathy is at university of california san francisco directing the west coast nidcap and apib training center. kathy exemplifies her definition of a newborn developmental specialist performing neurodevelopmental/behavioral assessments, providing developmental interventions and developing a continuously evolving plan of individualized developmental support for each nicu family and infant as well as consulting with professional staff and supporting the caregiving relationship with staff, parents and extended family. we sincerely thank kathy for her many years of service to the nfi board and look forward to her continued dedication as an active member of our professional organization. in appreciation rotterdam, netherlands tehran, iran algarve, portugal atlanta, ga usa barcelona, spain beirut, lebanon bristol, england brussels, belgium boise, id usa boston, ma usa brest, franceålesund, norway camden, nj usa chicago, il usa cincinnati, oh usa denver, co usa limerick, ireland hartford, ct usa houston, tx usa kfar saba, isrealbuenos aires, argentina madrid, spain modena, italy newark, nj usa oakland, ca usa rimini, italy rochester, mn usa phoenix, az usa porto, portugal raleigh, nc usa salzburg, austria san francisco, ca usa shanghai, china st. petersburg, fl usa takachan oosaka, japan tehran, iran stockholm, sweden sydney, australia taichung, taiwan tehran, iran torino, italy tübingen, germany yokohama, japan copenhagen, denmark toulouse, france honors world prematurity day 2016 voice of the newborn nidcap training centers mentoring caregivers. changing hospitals. improving the future for newborns & their families. riyadh, saudi arabialondon, england developmental observer • 2016 • 25 d e v e l o p m e n ta l r e s o u r c e s joke wielenga, rn, phd publications aita m, goulet c, oberlander t, snider l, johnston. a randomized controlled trial of eye shields and earmuffs to reduce pain response of preterm infants. journal of neonatal nursing. 2015; 21(3): 93-103. aldrete-cortez v, perapoch j, poblano a. skin to skin care and heart rate regulation. early human development. 2015; 91(12):705-6. almadhoob a, ohlsson a. sound reduction management in the neonatal intensive care unit for preterm or very low birth weight infants. cochrane database of systematic reviews 2015, issue 1. cd010333. doi: 10.1002/14651858. cd010333.pub2. altimier l,kenner c, damus k. the wee care neuroprotective nicu program (wee care): the effect of a comprehensive developmental care training program on seven neuroprotective core measures for family-centered developmental care of premature neonates. newborn & infant nursing reviews. 2015; 15(1):6-16. altimier l. compassionate family care framework: a new collaborative compassionate care model for nicu families and caregivers. newborn & infant nursing reviews 2015; 15(1): 33-41. azarmnejad e, sarhangi f, javadi m, rejeh n. the effect of mother’s voice on arterial blood sampling: induced pain in neonates hospitalized in neonate intensive care unit. global journal of health science. 2015; 7(6):198-204. badr lk, abdallah b, kahale l. a metaanalysis of preterm infant massage: an ancient practice with contemporary applications. american journal of maternal/ child nursing. 2015; 40(6):344-58. baker cs, naumann st. transitioning to couplet care. journal of obstetric, gynecologic & neonatal nursing. 2015; 44:s27-8. baley j, committee on fetus and newborn. skin-to-skin care for term and preterm infants in the neonatal icu. pediatrics. 2015; 136(3):596-9. bellieni cv, tei m, buonocore g. should we assess pain in newborn infants using a scoring system or just a detection method? acta paediatrica. 2015; 104(3):221-4. bembich s, cont g, baldassi g, bua j, demarini s. maternal holding vs oral glucose administration as nonpharmacologic analgesia in newborns: a functional neuroimaging study. jama pediatrics. 2015; 169(3):284-5. bonan kc, pimentel filho jda c, tristão rm, de jesus jal, campos junior d. sleep deprivation, pain and prematurity: a review study. arquivos de neuropsiquiatria. 2015; 73(2):147-54. bonet m, forcella e, blondel b, draper es, agostino r, cuttini m, zeitlin j. approaches to supporting lactation and breastfeeding for very preterm infants in the nicu: a qualitative study in three european regions. bmj open. 2015; 5(6):e006973. van den bosch ge, white t, el marroun h, simons sh, van der lugt a, van der geest jn, tibboel d, van dijk m. prematurity, opioid exposure and neonatal pain: do they affect the developing brain? neonatology. 2015; 108(1):8-15. carbajal r, eriksson m, courtois e, anand kj. sedation and analgesia for neonates in nicus across europe. archives of pediatrics and adolescent medicine. 2015; 22(5 suppl 1):95-6. french. carbajal r, gréteau s, arnaud c, guedj r. pain in neonatology. non-pharmacological treatment. archives of pediatrics and adolescent medicine.2015; 22(2):217-21. french. carvalho de jesus n, gomes vieira bd, alves vh, rodrigues dp, pereira de souza r, paiva ed. the experience of the kangaroo method: the perception of the father. journal of nursing ufpe / revista de enfermagem ufpe. 2015; 9(7): 8542-8550. castral tc, warnock f, dos santos cb, daré mf, moreira ac, antonini sr, scochi cg. maternal mood and concordant maternal and infant salivary cortisol during heel lance while in kangaroo care. european journal of pain. 2015; 19(3):429-38. cinar n, köse d, altinkaynak s. the relationship between maternal attachment, perceived social support and breast-feeding sufficiency. journal of the college of physicians and surgeons pakistan.2015;25(4):271-5. colditz p, sanders mr, boyd r, pritchard m, gray p, o’callaghan mj, slaughter v, whittingham k, o’rourke p, winter l, evans t, herd m, ahern j, jardine l. prem baby triple p: a randomised controlled trial of enhanced parenting capacity to improve developmental outcomes in preterm infants. bmc pediatrics. 2015: 4;15. collins ct, makrides m, mcphee aj. early discharge with home support of gavage feeding for stable preterm infants who have not established full oral feeds. cochrane database of systematic reviews. 2015, jul 8; 7:cd003743. doi: 10.1002/14651858.cd003743.pub2. edéll-gustafsson u, angelhoff c, johnsson e, karlsson j, mörelius e. hindering and buffering factors for parental sleep in neonatal care. a phenomenographic study. journal of clinical nursing. 2015; 24(5-6):717-27. gao h, xu g, gao h, dong r, fu h, wang d, zhang h, zhang h. effect of repeated kangaroo mother care on repeated procedural pain in preterm infants: a randomized controlled trial. international journal of nursing studies. 2015; 52(7):1157-65. gregg dj, dennison ba, restina k. breastfeeding-friendly erie county: establishing a baby café network. journal of human lactation. 2015; 31(4):592-4. http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjrq%2b2slarsuik3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjrq%2b2slarsuik3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjrq%2b2slarsuik3o2k69fyvetr6oty2%2fam&hid=4204 https://www.ncbi.nlm.nih.gov/pubmed/26529176 https://www.ncbi.nlm.nih.gov/pubmed/25599227 https://www.ncbi.nlm.nih.gov/pubmed/25599227 https://www.ncbi.nlm.nih.gov/pubmed/25599227 https://www.ncbi.nlm.nih.gov/pubmed/25599227 https://www.ncbi.nlm.nih.gov/pubmed/25742585 https://www.ncbi.nlm.nih.gov/pubmed/25742585 https://www.ncbi.nlm.nih.gov/pubmed/25899193 https://www.ncbi.nlm.nih.gov/pubmed/25899193 https://www.ncbi.nlm.nih.gov/pubmed/25899193 https://www.ncbi.nlm.nih.gov/pubmed/25884634 https://www.ncbi.nlm.nih.gov/pubmed/25884634 https://www.ncbi.nlm.nih.gov/pubmed/25884634 https://www.ncbi.nlm.nih.gov/pubmed/25884634 https://www.ncbi.nlm.nih.gov/pubmed/25912524 https://www.ncbi.nlm.nih.gov/pubmed/25912524 https://www.ncbi.nlm.nih.gov/pubmed/25912524 https://www.ncbi.nlm.nih.gov/pubmed/25912524 26 • 2016 • developmental observer hartley ka, miller cs, gephart sm. facilitated tucking to reduce pain in neonates: evidence for best practice. advanced neonatal care. 2015; 15(3):201-8. heiderich tm, leslie at, guinsburg r. neonatal procedural pain can be assessed by computer software that has good sensitivity and specificity to detect facial movements. acta paediatrica. 2015; 104(2):e63-9. ho lp, ho s, leung d, so w, chan c. a feasibility and efficacy randomized controlled trial of swaddling for controlling procedural pain in preterm infants. journal of clinical nursing. 2016; 25(3/4): 472-82. hugill k. the senses of touch and olfaction in early mother-infant interaction. british journal of midwifery. 2015; 23(4): 238-43. judge mp, chang l, lammi-keefe cj. evidence of developmental continuity from birth to 1 year: sleep, temperament, problem solving, and recognition memory. advanced neonatal care. 2015; 15(2):125-33. kiechl-kohlendorfer u, merkle u, deufert d, neubauer v, peglow up, griesmaier e. effect of developmental care for very premature infants on neurodevelopmental outcome at 2 years of age. infant behavioral development. 2015; 39:166-72. lacina l, casper t, dixon m, harmeyer j, haberman b, alberts jr, simakajornboon n, visscher mo. behavioral observation differentiates the effects of an intervention to promote sleep in premature infants: a pilot study. advanced neonatal care. 2015; 15(1):70-6. lai nm, foong sc, foong wc, tan k. co-bedding in neonatal nursery for promoting growth and neurodevelopment in stable preterm twins. cochrane database of systematic reviews 2016, issue 4. art. no: cd008313. doi: 10.1002/14651858. cd008313.pub3. loewy j. nicu music therapy: song of kin as critical lullaby in research and practice. ann n y national academy of sciences. 2015; 1337:178-85. ludington-hoe sm. skin-to-skin contact: a comforting place with comfort food. american journal of maternal child nursing. 2015; 40(6):359-66. maitre nl. neurorehabilitation after neonatal intensive care: evidence and challenges. archives of disease in childhood. fetal neonatal edition. 2015; 100(6):f534-40. montirosso r, provenzi l. implications of epigenetics and stress regulation on research and developmental care of preterm infants. journal of obstetric gynecological neonatal nursing. 2015; 44(2):174-82. mosqueda-peña r, lora-pablos d, pavón-muñoz a, ureta-velasco n, moralpumarega mt, pallás-alonso cr. impact of a developmental care training course on the knowledge and satisfaction of health care professionals in neonatal units: a multicenter study. pediatric neonatology. 2016; 57(2):97-104. myers mm, grieve pg, stark ri, isler jr, hofer ma, yang j, ludwig rj, welch mg. family nurture intervention in preterm infants alters frontal cortical functional connectivity assessed by eeg coherence. acta paediatrica. 2015, jul; 104(7): 670-7. nazzi e, bisogni s. l’efficacia di specifiche manovre del metodo nidcap nello sviluppo neurocomportamentale del prematuro. una revisione della letteratura. italian journal of pediatric nursing science/ infermieri dei bambini: giornale italiano di scienze infermieristiche pediatriche, primavera. 2015; 7(1):27-31. italian. nelson am, bedford pj. mothering a preterm infant receiving nidcap care in a level iii newborn intensive care unit. journal of pediatric nursing. 2016; pii: s0882-5963. ohlsson a, shah ps. paracetamol (acetaminophen) for prevention or treatment of pain in newborns. cochrane database of systematic reviews. 2015; issue 6. art. no: cd011219. doi: 10.1002/14651858. cd011219.pub2. pillai riddell rr, racine nm, gennis hg, turcotte k, uman ls, horton re, ahola kohut s, hillgrove stuart j, stevens b, lisi dm. non-pharmacological management of infant and young child procedural pain. cochrane database of systematic reviews. 2015, issue 12. art. no: cd006275. doi: 10.1002/14651858. cd006275.pub3. provenzi l, barello s. behavioral epigenetics of family-centered care in the neonatal intensive care unit. jama pediatrics. 2015; 169(7):697-8. puapornpong p, raungrongmorakot k, hemachandra a, ketsuwan s, wongin s. comparisons of latching on between newborns fed with feeding tubes and cup feedings. journal of the medical association of thailand. 2015; 98 suppl 9:s61-5. ranger m, zwicker jg, chau cm, park mt, chakravarthy mm, poskitt k, miller sp, bjornson bh, tam ew, chau v, synnes ar, grunau re. neonatal pain and infection related to smaller cerebellum in very preterm children at school age. journal of pediatrics. 2015, aug; 167(2):292-8. sannino p, giannì ml, de bon g, fontana c, picciolini o, plevani l, fumagalli m, consonni d, mosca f. support to mothers of premature babies using nidcap method: a non-randomized controlled trial. early human development. 2016; 95:15-20. sansavini a, zavagli v, guarini a, savini s, alessandroni r, faldella g. dyadic coregulation, affective intensity and infant’s development at 12 months: a comparison among extremely preterm and full-term dyads. infant behavioral development. 2015; 40:29-40. santos j, pearce se, stroustrup a. impact of hospital-based environmental exposures on neurodevelopmental outcomes of preterm infants. current opinion in pediatrics. 2015; 27(2): 254-60. seidman g, unnikrishnan s, kenny e, myslinski s, cairns-smith s, mulligan b, engmann c. barriers and enablers of kangaroo mother care practice: a systematic review. public library of science one. 2015; 10(5): e0125643. http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjr6izs7kvtuyk3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjr6izs7kvtuyk3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjr6izs7kvtuyk3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjr6izs7kvtuyk3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjrqm1ulsmte6k3o2k69fyvetr6oty2%2fam&hid=4204 http://web.a.ebscohost.com/ehost/viewarticle?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie469%2bf8erjiqy3y1us1%2bt7vquts62orkm0lrfss6m4srawv2wk6vb57onfe%2flf7ybn2rtjtkqxsa%2brr1cznop57n27huqc4nq76piaporff7u3zd7f5ltjrqm1ulsmte6k3o2k69fyvetr6oty2%2fam&hid=4204 https://www.ncbi.nlm.nih.gov/pubmed/26280947 https://www.ncbi.nlm.nih.gov/pubmed/26280947 https://www.ncbi.nlm.nih.gov/pubmed/25987534 https://www.ncbi.nlm.nih.gov/pubmed/25987534 https://www.ncbi.nlm.nih.gov/pubmed/25987534 https://www.ncbi.nlm.nih.gov/pubmed/25987534 developmental observer • 2016 • 27 the nfi thanks its first corporate sponsor, sonicu, as well as its second corporate sponsor, dr. brown’s. the generous support of these sponsors helps the nfi raise global awareness of the need for nidcap care and enhances opportunities to develop educational programs to broaden the reach of this care to more and more nicu professionals and the ‘preterm families’ they serve. sonicu is recognized as a leader in nicu monitoring technology. sonicu’s mission to measure and monitor is rooted in the passion to protect and the desire to create a safe, healing environment. for decades, parents have relied on dr. brown’s® products to make sure their babies receive the best nutrition from the start, including longtimefavorite natural flow bottles that help reduce feeding problems like colic, spit-up, burping and gas. now, the new dr. brown’s® medical product line extends the same dr. brown’s® healthy benefits to families with babies who have feeding issues, in addition to the medical professionals who play a critical role in infant development. our sponsors silberstein d, litmanovitz i. developmental care in the neonatal intensive care unit according to newborn individualized developmental care and assessment program. journal of the israeli medical association. 2016;155(1): 27-31,68,67. hebrew. spittle a, orton j, anderson pj, boyd r, doyle lw. early developmental intervention programs provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. cochrane database of systematic reviews. 2015, issue 11. art. no.: cd005495. doi: 10.1002/14651858.cd005495.pub4. trajkovski s, schmied v, vickers m, jackson d. using appreciative inquiry to bring neonatal nurses and parents together to enhance family-centred care: a collaborative workshop. journal of child health care. 2015; 19(2): 239-53. vazquez v, xiaomei c, dejong a. mater nal and paternal knowledge and perceptions regarding infant pain in the nicu. neonatal network. 2015; 34(6): 337-44. victoria nc, murphy az. the longterm impact of early life pain on adult responses to anxiety and stress: historical perspectives and empirical evidence. experimental neurology. 2016, jan; 275 pt 2:261-73. vittner d, casavant s, mcgrath jm. a meta-ethnography: skin-to-skin holding from the caregiver’s perspective. advanced neonatal care. 2015, jun;15(3):191-200. voos kc, miller l, park n, olsen s. promoting family-centered care in the nicu through a parent-to-parent manager position. advanced neonatal care. 2015;15(2):119-24. warren i, hicks b, kleberg a, eliahoo j, anand kj, hickson m. the validity and reliability of the evaluation of intervention scale (evin): preliminary report. acta paediatrica. 2016;20. e-pub. watson j, mcguire w. responsive versus scheduled feeding for preterm infants. cochrane database of systematic reviews. 2015, issue 10. art. no: cd005255. doi: 10.1002/14651858.cd005255.pub4. weis, j, zoffmann v, egerod i. enhancing person-centered communication in nicu: a comparative thematic analysis. nursing in critical care. 2015; 20(6): 287-98. westrup b. family-centered developmentally supportive care: the swedish example. archives of pediatrics. 2015; 22(10): 1086-91. yin t, yang l, lee ty, li cc, hua ym, liaw jj. development of atraumatic heelstick procedures by combined treatment with non-nutritive sucking, oral sucrose, and facilitated tucking: a randomized, controlled trial. international journal of nursing studies. 2015; 52(8):1288-99. zeiner v, storm h, doheny kk. preterm infants’ behaviors and skin conductance responses to nurse handling in the nicu. journal of maternal fetal neonatal medicine. 2016; 29(15): 2530-5. video/movies video and movie (fragment) in english https://www.youtube.com/watch?v= dsqc3zq7ehw 28 • 2016 • developmental observer newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery assessment and certification program (nnacp) the nidcap nursery assessment and certification program (nnacp) provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. external review and validation by the nfi may be sought when a nursery feels it has achieved this goal. successful nidcap nursery certification, the ultimate goal, denotes distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment. nurseries that have achieved this recognition serve as a model and an inspiration to others. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nnacp director at: nnacpdirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve mission the nfi’s mission is to promote the advancement of the philosophy and science of nidcap care and to assure the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, may 1, 2015 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship-based, family-integrated approach. adopted by the nfi board, may 1, 2015 developmental observer • 2016 • 29 developmental observer nidcap federation international board of directors and staff 2015–2016 the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president gretchen lawhon, phd, rn, cbc, faan nidcap master trainer email: premieg@gmail.com vice president for administration james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org vice president for organizational advancement deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary kaye spence children’s hospital at westmead westmead, sydney, australia email: kaye.spence@health.nsw.gov.au jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center rita cummings, ma vice president–operations san francisco zen center mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: kathy.vandenberg@ucsf.edu rodd e. hedlund, med director nidcap nursery assessment and certification program nidcap trainer email: nnacpdirector@nidcap.org sandra kosta, ba financial operations and administration director email: sandra.kosta@childrens.harvard.edu http://nidcap.org/en/nfi-news/developmental-observer-the-official-newsletter-of-the-nfi/ 30 • 2016 • developmental observer nidcap on the web to learn more about the nfi and its programs please visit us at www.nidcap.org please visit the nfi’s youtube channel to watch videos about nidcap (in 13 languages) and the nnacp. www.youtube.com/user/nidcapfi the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. follow us on all of our social media platforms: like us on facebook follow us on twitter follow our posts on pinterest connect with colleagues on linkedin watch our videos on you tube read and participate on our nidcap blog http://nidcap.org/blog/ https://www.facebook.com/nidcap https://twitter.com/nidcap https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international https://www.youtube.com/user/nidcapfi http://nidcap.org/blog/ http://nidcap.org/blog/ https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international www.nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center (inactive) university of oklahoma health sciences center oklahoma city, oklahoma, usa director: andrea willeitner, md west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: kathy.vandenberg@ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: marcy weber mba, msn, rn co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy@uclh.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, med contact: windy crow email: stjosephnidcap@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: hanne.aagaard@skejby.rm.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt nidcap germany, nidcap training center tübingen, tübingen, germany universitätsklinik für kinderund jugendmedizin director: christian poets, md phd contact: natalie broghammer, rn email: natalie.broghammer@med.uni-tuebingen.de n i d c a p t r a i n i n g c e n t e r s by order of establishment become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org http://nidcap.org/en/about-us/membership-overview/ developmental observer • 2020 • 3 background the neonatal intensive care unit (nicu) is a complex, technology-driven environment where health care professionals have many tasks to accomplish throughout the day. critically ill infants have complex physiological needs requiring advanced medical and nursing interventions to sustain life. developing parent-infant relationships are influenced by the interactions within these early life experiences.1 parents have identified communication and information provided by nurses as important factors influencing their experiences.2,3 prior research establishes that caring behaviors directed at the infant’s family are a significant component contributing to parent satisfaction with care.4,5 additionally, the family unit has been identified to impact the health and well-being of the infant and conversely, the health of the infant has been shown to impact the health status of the family.6 aims the purpose of this study is to examine health care providers’ beliefs and perceptions regarding providing family-centered care (fcc) in the nicu as well as variables that may influence provision of fcc. methods this exploratory descriptive study used an online survey format. the survey comprised of 10 items from the perceived stress scale, 10 items related to symptoms of burnout, a subscale of the professional quality of life (proqol) scale and 27 items of the family nurse caring belief scale (fncbs).7 there were 6 items related to demographic characteristics, and 2 items regarding rationing care. hospital irb approval was obtained. an email which contained an information sheet describing the study with a link to a secure anonymous online survey through (www.qualtrics. com) was sent by an administrative assistant. no identifiable information was collected from participants. consent was implied if respondents connected to the link to access the survey. two reminder emails were sent after 1 and 3 weeks from the initial email invitation. the questionnaire was available to participants for a total of 4 weeks. spss version 25 was used for analysis of descriptive statistics, pearson’s correlation and one-way analysis of variance (anova) were used to analyze participant responses. results the sample consisted of 115 multidisciplinary participants working in a level lv nicu in southeastern united states. participants report strong levels of beliefs of fcc and value its importance. the majority of participants (82%) strongly agree that no matter how sick the infant is, he/she needs to be treated as an individual, the remaining 18% agreed with this statement. participants strongly agreed (68%) being available to families is an essential part of care in the nicu, the remaining 32% of participants agreed with this statement. a significant correlation (.001) exists between participant’s stress composite score and fcc composite score indicating higher levels of stress are correlated with lower fcc scores. there were significant relationships between participant’s years of experience (0.002) and education levels (0.005) in the nicu and fcc composite scores. there were also significant relationships between participant’s years of experience (0.004) and fcc education (0.039) and perceived stress scale composite scores. there were no relationships identified for the professional quality of life (burnout) composite scores and demographic characteristics. conclusion health care professionals care greatly about providing fcc and understand its importance. results suggest that participants agreed fcc is important yet feel inadequate staffing and inappropriate assignments may lead to rationing of care to infants and their families. further research is needed given the limitations of this exploratory single-site study. it is essential to continue exploring factors that may lead to rationing of fcc, provision of fcc in the nicu is associated with reduced stress experiences, shorter durations of stay, and ultimately enhanced parent-infant relationships.8 references: 1. vittner d, mcgrath jm, robinson j, lawhon g, cusson r, eisenfeld l, walsh s, young e, cong x. increases in oxytocin from skin-to-skin contact enhances development of parent-infant relationships. biological research for nursing 2018, 20(1):54-62. http://doi: 10.1177/1099800417735633 2. lawhon g. integrated nursing care: vital issues important in the human care of the newborn. seminars in neonatology 2002,7:441–446. 3. johnson an. promoting maternal confidence in the nicu. journal of pediatric health care 2008, 254–257. 4. meiers sj, tomlinson p, peden-mcalpine, c. development of the family nurse caring belief scale (fncbs). journal of family nursing 2007, 13(4): 484-502. http// doi:10.1177/1074840707310734 5. yu x, zhang j. family centred care for hospitalized preterm infants: a systematic review and meta analysis. international journal of nursing practice 2018, e12705. 6. hinds ps, feetham sl, patterson kelly k, nolan mt. "the family factor" knowledge needed in oncology research. cancer nursing 2012, 35(1);1-2. http//doi:10.1097/ ncc.0b013e31823b561f 7. magri ep. psychometric validation of the family nurse caring belief scale in a neonatal nursing population. theses & dissertation 2014. 8. staniszewska s, brett j, redshaw m, psychol c, hamilton k, newburn, et al. the poppy study: developing a model of family-centered care for neonatal units. worldviews of evidence-based nursing 2012, 243-255. http//doi:10.1111/j.1741-6787.2012.00253.x health care professionals beliefs and perceptions on family-centered care in the nicu vittner d1,2, parker m1, demeo s1, baxter a2, and mcgrath j3 1 wakemed health & hospitals, raleigh, nc usa 2 university of connecticut, school of nursing, storrs, ct usa 3 university of texas, health science center san antonio, san antonio, tx usa doi: 10.14434/do.v13i1.29080 8 • 2021 • developmental observer background during the covid-19 pandemic many hospitals in italy restricted parental access to newborn intensive care units (nicu). in the best of cases parents have been allowed to stay with their babies only one parent at a time, wearing face masks. fathers were mostly hampered by the restrictive visiting polices, although their role in providing emotional support to mothers is well recognized. in addition, a good relationship between fathers and newborns will improve children's ability to regulate their emotions and impulses. aims/purpose to report challenges and opportunities in performing family centered care in a level iii italian nicu during the covid-19 pandemic outbreak. methods during the lockdown period the level iii nicu in rimini remained open for parents 24 hours a day. as opposed to the pre-covid-19 period, only one parent could take care of their baby at a time and were asked to wear a face mask. this new policy became necessary because of legislative and logistic reasons (eg., very small spaces in the unit). to cope with the new situation we put in place several strategies: empowering parents; regular multidisciplinary meetings with both parents; staff support by means of weekly staff briefings and the administration of a symptom checklist to the healthcare team before and after a mindfulness intervention performed prior to the covid-19 pandemic, and re-administered during the pandemic outbreak; early hospital discharge including home visits. non-structured interviews of fathers were also performed by a nidcap professional to explore father’s feelings. results during a two-months period (march-april 2020) eight vlbw infants (birthweight 943±341 grams, gestational age 26±2 weeks) were admitted to the nicu. parents origin was heterogeneous: two from italy, one from albania, one from france, one from senegal, one from china, and two from brazil. all mothers practiced skin-to-skin contact (ssc) with their babies, initiated at 9±6 days; 6/8 fathers initiated the ssc at 13±6 days. moreover, all fathers and mothers performed daily care for their babies (eg., tube feeding, nappy change). fathers’ interviews unveiled a loving engagement with their babies (“at the beginning i was loath to touch my baby, but now i enjoy physical contact with him. i am also able to manage the nasal prongs. now, i’d like to stay always in ssc, because it gives me a sense of safety and helps me to prepare to go home with him”; “taking care of him helps me to be in tune with nurses”; “i’m happy to stay in ssc with my daughter, if i could i’ll do it continuously. i love to give her a delicate massage behind the ear”). the symptom checklist administered to the healthcare team showed that the interventions was efficacious in reducing the anxiety score which remained stable during the covid-19 period. conclusion during the covid-19 pandemic, missing facial expressions because of facial masks, made it difficult to modulate verbal communication with parents and to interpret parents' reaction to communication; moreover, at the bedside, parents were alone in communicating with the staff, without the support of their partner, feeling the emotional burden of reporting updates about the baby to the whole family. this led to a higher degree of uncertainty, fragility, and lack of confidence among parents. despite this, both parents became involved in their baby’s care and staff did not show increased levels of stress during this period. coping strategies implemented in the unit could have contributed to these results. moreover, during the covid-19 period, fathers, without the mother’s presence, took up the challenge of taking care of their babies as primary caregivers. in conclusion, staff/parent partnerships, in challenging situations, can produce surprising opportunities for families. references: 1. lavizzari a, klingenberg c, profit j, zupancic jaf, davis as, mosca f, molloy ej, roehr cc, and the international neonatal covid-19 consortium. international comparison of guidelines for managing neonates at the early phase of the sars-cov-2 pandemic. pediatric research, published: 15 june 2020. doi: 10.1038/s41390-020-0976-5 2. o'brien k, robson k, bracht m, cruz m, lui k, alvaro r, da silva o, monterrosa l, narvey m, ng e, soraisham a, ye x y, mirea l, tarnow-mordi w, lee s, and the ficare study group and ficare parent advisory board. effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. lancet child adolescent health. 2018 apr;2(4):245-254. doi: 10.1016/s2352-4642(18)30039-7. 3. fishera d, khashue,f m, , adamab ea, feeleyc n , garfieldd cf , irelande jf, kolioulig f, lindbergh b, nørgaardi b, provenzi l, thomson-salok f, van teijlingen e. fathers in neonatal units: improving infant health by supporting the babyfather bond and mother-father coparenting. journal of neonatal nursing, 24 (6), 306-312. doi: 10.1016/j.jnn.2018.08.007 becoming parents in nicu during the covid-19 pandemic: challenges and opportunities ancora g, simeone n. neonatal intensive care unit, ausl romagna, infermi hospital,rimini, italy doi: 10.14434/do.v14i1.31812 save the dates the 32nd annual nidcap trainers meeting virtual meeting october 20–22, 2021 check the nfi website for further details. www.nidcap.org 2018 vol. 11 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “when i approach a child, [the child] inspires in me two sentiments – tenderness for what [the child] is and respect for what [the child] may become.” louis pasteur nidcap trainers meeting abstract edition dear readers, welcome to the third abstract edition of the developmental observer. in this issue, we publish the abstracts presented at our 28th annual nidcap trainers meeting in edmonton, canada, october 21-24, 2017. the peer review process led by nidcap trainer linda lacina, msn, rn, hn-bc selected abstracts for presentation based on their relevance, innovation, results, insightfulness and overall clarity and content. abstracts include: newborn intensive care nursery (nicn) initiatives (“baby love letters”, free parental parking, family mentor program, rounding with parents, and surgical nicu skin to skin care); education (foundational neurodevelopmental care program, positive oral experiences training, sleep care nursing educational program, nidcap mentored educational program); research (neurobehavioral profile preterm and fullterm comparisons, maternal administration of the edin pain scale, and neurobehavioral disorganization); and beyond the nicn (newborn bridge clinic, developmental care, and parental support). this body of work reflects our members’ and their colleagues’ wealth of knowledge, scientific curiosity, experience and creativity. we are enriched by learning from one another as we continue to evolve our nidcap model and its implementation for future generations. the developmental observer’s editors welcome your comments and feedback. developmentally yours, the editors developmental observer table of contents introduction ............................................... 1 abstracts .................................................... 2 meetings and conferences .................... 23 nidcap on the web ................................ 25 abstract edition participants from our 28th annual nidcap trainers meeting (october 21-24, 2017) in edmonton, alberta, canada 2 • 2018 • developmental observer an enhanced dynamic and interactive mentored educational program to teach nidcap principles in the critical care setting kathi frankel, children’s healthcare of atlanta, atlanta, georgia background clinical and basic science evidence support early intervention as being protective of the developing brain of hospitalized infants. this support can also be stabilizing and nurturing for families as they encounter the healthcare environment. the purpose of this project is to disseminate the most current developmental practices to rehabilitation professionals working in the critical care environment of infants, address consistency of care, and standardize the provision of assessment, treatment and support to infants and families. objective • test the effectiveness of an enhanced teaching method that tailors newborn individualized developmental care and assessment program (nidcap) instruction to individual healthcare professionals. methods a structured model for creating training programs and involving the five steps of analysis, design, development, implementation and evaluation (addie) was used by a nidcap professional (kf) to guide and individualize learning in a mentored peer-topeer training environment. non-nidcap trained therapists (physical, occupational and speech therapy trainees) were given pre-mentoring, interim, and post-mentoring surveys to assess perceptions and gaps of knowledge in nidcap principles. trainees completed interim and post-mentoring surveys of the mentor based on the principles of reflective supervision. survey results were used throughout the intervention period to improve implementation. knowledge gaps were discussed with each trainee to facilitate an individualized approach to learning. the nidcap evaluation form was used to identify coping versus worrisome infant behaviors and how those behaviors would affect the trainee’s interactions with the infant, family and staff. once permission was obtained from staff to observe an episode of care, the mentor and trainee participated in a series of three bedside observational assessments led and facilitated by the mentor. sessions included an interactive discussion between mentor and trainee regarding assessment of the physical environment while providing real-time descriptions of infant behaviors related to staff interactions and impact of the environment. at least one of the observation sessions occurred with the infant’s family present. nidcap training materials were used to guide and structure the peer-to-peer discussion. learners were guided in the use of a structured format (amsas – autonomic/motor/state/attention/self-regulation) to formulate a nidcap evaluation and goals. conclusions use of a structured, yet individualized training model that includes peer-to-peer interactions at the bedside with ongoing bi-directional mentor-trainee feedback has the potential to improve parentinfant development within a critical care setting by accelerating adoption of nidcap principles. this mentored instructional approach may also increase healthy working relationships and create new champions for family-centered developmental care. references 1. lee yw, lin hl, tseng hl, tsai ym, lee-hsieh j. using training needs assessment to develop a nurse preceptor-centered training program. journal of continuing education in nursing. 2017; may 1;48(5):220-229. 2. als h, lester bm, tronick e, brazelton tb. toward a research instrument for the assessment of preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw (eds.), theory and research in behavioral pediatrics, vol 1. new york: plenum, 35-63, 1982. 3. als h. self-regulation and motor development in preterm infants. in lockman j, hazen n (eds.), action in social context. perspectives on early development. 1989; new york: plenum press, 65-97. statement of financial support kathi frankel has no financial relationships with commercial entities to disclose. a semi-annual publication of the nidcap federation international ©2018. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor diane ballweg, msn, aprn, cns, rnc-nic associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer developmental observer • 2018 • 3 jessica bowen and jean powlesland university of illinois medical center at chicago, chicago, illinois background in supporting the relationship between parents and their baby, it’s important for providers in the newborn intensive care unit (nicu) to understand how parents view their baby. research shows a parent’s view of their child will impact how they interact and how they parent. many parents start to imagine and attach to their baby while the baby is still in the womb. this time is shortened for nicu parents, sometimes nearly in half. it is critical to understand how a nicu parent views their child, how they imagine who the baby already is and to help them create a rich and full understanding of their child’s strengths and challenges in the nicu and beyond. as we support nidcap, the university of illinois (ui) health nicu created baby love letters written from the voice of the newborn to help parents bond, understand and support their baby while in the nicu. objectives • help parents develop an understanding of their infant’s unique experience in the nicu. • support parents to feel confident interacting and bonding with their baby. • provide a sentimental, informational and easy to use tool for parents to foster the emerging parent-infant relationship and support development of their baby. methods the ui health nicu piloted the baby love letter program in january 2017 by crafting templates using parenting based on the developmental progression of preterm infants (children’s medical ventures 2006) as a guide. distinct from nidcap observations, the templates are written in the first person from the baby to his/ her parent(s). the baby’s primary therapist, using a synactive theory approach, individualizes the templates. the letters are provided to the family as well as entered into the electronic medical chart. since january, parents with a baby born at 29 weeks and younger were invited to receive a love letter every two weeks. all parents, 17 families with 21 babies, opted to receive the letters. oral feedback regarding the experience of receiving the letters was obtained during hospitalization. quantitative data was also gathered near discharge using a survey designed to capture the mother’s attitude towards her child and her feelings of closeness to her child as well as her role as a mother. during this initial period, two babies in the program died. the letters may be a valuable resource in grieving and remain a keepsake for these families. conclusions the goal of the baby love letters is to help parents see their baby as a unique being, and support them in their parenting role. oral feedback from parents during their nicu stay included: • a mother of twin boys stated she would like to frame the first letter because it was the first thing she received signed by both her boys. later, this mother said she used the letters to help engage the anxious father, who at first was skeptical because the letters were written in the “baby’s voice”, but now he really likes them, especially how they are individualized to each baby. the mother used the letters that discussed skin-to-skin holding with him to help him build the confidence he needed to provide kangaroo care. • another mother posted the first letter on facebook and proudly reported it received 107 likes. she was excited to have her friends and family read the letter from her very small 26 week baby girl. the mother expressed gratitude, saved the letters in a scrapbook, and reads the letters often, although she reported they make her cry “in a good way.” the mother waits to open her letters until her baby’s father is with her, like a ritual. he usually reads the letters out loud to her. results of the written surveys given at discharge were evaluated. at this time, six surveys have been collected. all mothers’ either agreed or strongly agreed on the following statements: • i feel secure taking the responsibility of caring for my baby (e.g., changing diapers, bathing, tucking into bed). • i feel my baby likes to have contact with me in the form of touch, voice, scent, eye contact (all separate questions). • it was easy for me to assume my role as a mother. additional feedback: • please describe your experience receiving love letters from your baby: • “i loved them! even though i know it wasn’t from her literally, it felt like everything she would say. i always felt warm reading them and they were a huge help in getting me through.” • “oh my god i loved the letters. they were amazing.” • “i liked it. it was a good experience because i learned things i didn’t know she would like like she likes her head rubbed!” • “i enjoyed reading them. they helped me feel like i was included in his development. it provided great ideas and clues regarding the things he was going through. although i know other mothers receive the same letter or are very similar, it felt very personal and went according to my son’s development.” nicu baby love letters christyn davis reading a love letter from her daughter, cailynn continued on page 11 4 • 2018 • developmental observer newborn bridge clinic to support infant transition home gretchen lawhon, clinical nurse scientist/nidcap master trainer, west coast nidcap and apib training center, san francisco, california, u.s.a background high risk and premature infants are discharged from the newborn intensive care unit (nicu) when they consistently gain weight, maintain their body temperature, are able to eat by mouth, have had their medical problems addressed with a plan of care, their parents and family are comfortable with the care required and the discharge teaching has been completed. the decision for discharge home is individualized to best meet the needs of the infant within the context of his or her family’s readiness. despite this, often parents feel this is an anxious and difficult time. the current follow up program, in collaboration with a nearby large hospital system, provides periodic developmental check-ups for infants discharged from the nicu. parents can arrange for this service through their pediatrician or family medicine physician. the typical schedule begins at three months corrected age. for example, if an infant was born at 28 weeks gestation (three months early), their first visit with the neonatal follow-up program may be when they are six months old in chronologic age. the majority of infants are discharged from the nicu by the time of their original due date and some are discharged even sooner, perhaps a month earlier if they are doing well and have met discharge criteria. this leads to a situation of families, having experienced tremendous therapeutic support for weeks and months in the nicu, being discharged home with a gap of three to four months before they may begin newborn follow up. objectives • infants and families receive support during the transition from hospital to home and community. • parents gain greater understanding of their infant’s behavior with anticipatory guidance for caregiving to enhance maturation and development while strategizing ways to support the infant’s vulnerability. • the neurobehavioral assessment, the assessment of preterm infant behavior (apib), will be performed every two to four weeks to monitor the infant’s emerging neurobehavioral organization and self-regulation, as well as the parents’ increasing degree of both competence and confidence in parenting. • the infant’s primary care provider will be supported with consultation and expertise to monitor the infant’s transition. implementation this newborn bridge clinic is a new innovative approach to “mind the gap” and support infants and families as they leave the hospital and transition home during the three to four months before they will be seen in a newborn follow up clinic. the clinic provides neurobehavioral assessment for screening and intervention, and medical co-management of the infant’s medical needs in collaboration with the infant’s primary health care provider. the bridge clinic begins within the nicu with the formation of supportive relationships to be continued through the transition to home and the community. the physicians, clinical nurse scientist and nutritionist facilitate this transition and provide the crucial safety net for those with complex medical conditions. infants born prematurely and/or who have special medical or social problems are seen in the bridge clinic one to two weeks after discharge and at intervals ranging from one to four weeks depending on the specific needs until they enter the current neonatal follow up program in collaboration with the larger collaborative hospital. individualized care is provided through the multidisciplinary team assessing the infant’s health, nutrition, growth, temperament and development as well as the parents’ degree of comfort and ability to provide nurturing care especially around the issues of feeding, sleeping and crying. parents are supported in gaining both confidence and competence in providing the sometimes very complex medical needs for these fragile infants. the provision of positive reinforcement of parenting and anticipatory guidance supports families in their transition from the newborn intensive care unit to their home and community. the bridge clinic provides written summaries to communicate with the infants’ primary medical care providers following each clinic visit and collaborate as needed to supplement their primary medical care. this may involve referrals for visiting nurses, early intervention and other programs within the family’s community. management of the special medical needs of these infants’ (e.g., medications, feeding problems, chronic conditions such as lung disease, apnea monitor care) and ongoing developmental assessment and intervention assures the infant’s best growth and development. summary success of the bridge clinic will be evaluated through statistics and measurements including: • number of infants seen in the bridge clinic. • rate of rehospitalization within the first six months following discharge from the nicu. • summary scores of the neurobehavioral evaluation (apib) to show increasing maturation and neurobehavioral organization. • growth patterns of the infants. • parent engagement measured through the nicu parent risk evaluation and engagement model and instrument (preemi). • successful entry into the traditional newborn follow-up program at three months corrected age. statement of financial support the newborn bridge clinic received financial support from the innovators’ circle program of the abington health foundation. gretchen lawhon has no financial relationships with commercial entities to disclose. developmental observer • 2018 • 5 background parental stress impairs parents’ ability to interact optimally with their infants and may lead to poor child developmental outcomes.1 one of the most recommended suggestions for supporting parents’ roles as caregivers is parent participation in medical rounds.2 some gaps have been demonstrated, however, between the goals of family centered care and its actual practice.3 there is debate about the pros and cons of facilitating parental participation in the newborn intensive care unit (nicu) and in rounds, with most reports not providing a clear determination of best practice.4 most of these studies were conducted in the united states, australia, and a large number of countries in northern europe. nevertheless, the incorporation of family centered care is not widely used in the countries of southern europe.5 objectives the hypotheses of the study was that implementation of a new model for including families in medical rounds based on family-centered care in the nicu, the adapted family-centered care model (afcr), will not decrease parent satisfaction, will not increase parent stress, and will improve professional satisfaction compared to the traditional rounding model (tr). the primary aims of the study were to compare the level of stress and the degree of family satisfaction, as well as the degree of professional satisfaction between both models of rounds. the secondary aim was to define the characteristics of parents who chose the afcr model. methods in april 2016, the new afcr rounding model, which included parent involvement, was implemented in the nicu. from this moment on, parents could willingly choose to participate in clinical rounds. data collection was performed between june 2016 and december 2016 with surveys given to parents and professionals. prior to implementation of the afcr model, prospective data collection was also performed from october 2015 to march 2016, when parent participation in medical rounds (tr model) was nonexistent. three groups of parents were defined: those who decided to participate willingly in rounds (group 1), those who decided not to participate in rounds when they had the possibility to participate in this (group 2), and the parents of the previous period in which they didn’t have the possibility to participate in rounds (group 3). three groups of professionals were also defined: those professionals whose parents of their patients decided to participate in rounds (group a), those professionals whose parents decided not to participate in rounds when they had the possibility to participate (group b), and those professionals of the previous period whose parents did not have the opportunity to participate in rounds (group c). the study was performed in a level iiic nicu with 900 admissions per year and an affiliated nidcap training center. all resident doctors, assistant physicians and nurses were offered participation in the study. parents were included if their newborn was in the nicu at least seven days, parents agreed to participate in the study and signed the informed consent. parents were excluded from the study if there was a language barrier and/ or if they were less than 18 years old. when an infant had been in the nicu at least one week, both parents were offered an assessment. the assessment consisted of two questionnaires: the parental stress scale: neonatal intensive care unit (pss:nicu)6 and the neonatal instrument of parent satisfaction (nips)7, as well as additional questions about education and demographic data. both questionnaires were completed twice: on the seventh day of hospitalization and on the day of discharge from the intensive care room. a questionnaire was distributed to staff on the day of discharge. results recruitment included 47, 26 and 63 parents (groups 1, 2 and 3 respectively) and 37, 29 and 63 professionals (groups a, b and c, respectively). response rates were 87.2% for parents and 78.5% for professionals. there were no significant differences in anxiety or satisfaction between the three groups of parents. the professional group a had higher scores on the satisfaction scales than group b (4.38 ± 0.64 vs 3.97 ± 0.68, p = 0.04). the parents of group 1 had baseline anxiety scores generated by alarms higher than those of group 2 (8.73 ± 4.55 vs 10.79 ± 4.74, p 0.04). parents showed significantly higher scores in three of the five questions about the utility of the new model for parents than the professionals. conclusion implementation of a rounding model that allows participation of parents in a nicu does not increase parental stress or decrease family satisfaction. this practice increases professional satisfaction and was not perceived to further inhibit clinical discussion or teaching in clinical rounds. the parents who were more stressed by the sounds and the alarms of the unit preferred to participate in medical rounds. references 1. davis l, edwards h, mohay h, wollin j. the impact of very premature birth on the psychological health of mothers. early human development. 2003; 73:61–70. 2. american academy of pediatrics, committee on hospital care, institute for patientand family centered care. patientand family-centered care and the pediatrician’s role. pediatrics. 2012; 129:394–404. 3. dunn m, reilly m, johnston a, hoopes r jr, abraham m. development and dissemination of potentially better practices for the provision of family-centered care in neonatology: the family-centered care map. pediatrics. 2006; 118:s95–s107. the impact of a new model for rounding with parents on families and professionals salvador piris1, maría lópez maestro1, bárbara muñoz1, javier de la cruz2 and carmen pallas1 1 neonatology unit, 12 de octubre hospital, madrid, spain 2 epidemiology, unit 12 de octubre hospital, purificación sierra psychology university uned, madrid, spain 6 • 2018 • developmental observer background sensory experiences of infants in the newborn intensive care unit (nicu) are vastly different from those that are biologically expected. the nicu environment can adversely impact the preterm infant’s rapidly developing brain.1–3 subsequent alterations in the preterm infant’s cognitive, physiological, emotional, and social development may persist beyond the nicu.1,4–6 engaging parents in learning their vulnerable infant’s unique abilities and challenges enhances the quality of parent-child relationships, which is critical for optimal neurodevelopmental outcomes.7–12 skin-to-skin care (ssc) promotes parental participation, strengthens the family role in the care of the fragile infant in the nicu, decreases parental feelings of helplessness, and increases responsiveness to the infant’s behavioral communication.13,14 improved neurodevelopmental outcomes, autonomic functioning, quality of sleep, growth, physiological stability, and attenuated stress and pain responses are associated with ssc for preterm infants.15–17 the evidence for ssc is primarily drawn from preterm or healthy term newborns. despite growing recognition of similar adverse neurodevelopmental outcomes for infants born around term requiring surgery shortly after birth,18–21 there is limited literature specifically discussing the use of ssc in this population. interventions are needed to address potentially modifiable risk factors. surgical infants may not be able to be held in traditional ssc. factors related to their specialized care make providing ssc challenging including wires, tubes, machinery, surgical wounds, environmental constraints of the unit, perceived fragility of the infant, and uncertainty of the safety or feasibility of ssc. parent touch techniques provided in a responsive and synchronous pattern can attenuate infant stress responses and improve parent-child interactions, thus improving family resiliency and functioning beyond the nicu.11, 22–24 support for alternative interventions promoting parent touch may be an important sustainable link in helping these infants achieve optimal neurodevelopmental progress in the surgical nicu and beyond. objectives • outline implementation of an initiative focusing on ssc and alternative touch methods within the context of a developmental care program in a surgical nicu. • discuss educational strategies used during implementation. • describe adaptations necessary for success within a surgical nicu. • highlight challenges experienced during implementation. • outline plans for evaluation. approach prior to december 2016, ssc was infrequently and inconsistently practiced in this unit. the multidisciplinary initiative was implemented over three months in an 18-bed level iii nicu that cares for newborns transferred from other facilities with surgical and/or cardiac conditions preand post-operatively. when unable to be held in traditional ssc, the initiative encouraged parental alternative touch methods including: (a) cradle holds with skin contact, (b) side-lying ssc, (c) skin contact while infant is in bed using arm encirclement, and (d) responsive parent touch such as supporting finger grasps or hand swaddling based on infant behavioral communication. although seemingly simple, ssc and alternative touch methods were difficult to integrate into the highly technological, rapid-turnover nicu. paired with the intensive monitoring and medical support provided to the infants, the physical environment and staff attitudes also presented as challenges. a systematic and adaptive approach was necessary to address the unit’s challenges and staff apprehensions, by allowing ample opportunity for engagement, discussion, and critical reflection. a multidisciplinary team created a comprehensive ssc package. pictorial and written tools were developed for staff and parents prior to implementation. parent resources, created with input from the parent advisory council, outlined the benefits of ssc, introduced safety guidelines, and provided a description of both traditional ssc holding and alternative touch methods. staff guidelines paralleled parent resources, with greater depth and complexity. these tools were used to facilitate discussion and ongoing review between staff and parents. staff and family collaboratively determined the most appropriate and feasible method of ssc based on a holistic assessment of the infant. these team discussions also addressed perceived barriers and determined any modifications needed to ensure safety and implementing skin-to-skin care and alternative touch methods in a surgical newborn intensive care unit valerie levesque1, krystal johnson1, amy mckenzie2, andrea nykipilo1, barbara taylor1, andrea goldsmith1 and chloe joynt3 1 nicu, stollery children’s hospital, alberta health services, edmonton, alberta, canada 2 respiratory therapy, stollery children’s hospital, alberta health services, edmonton, alberta, canada 3 nicu, department of pediatrics, university of alberta, stollery children’s hospital, alberta health services, edmonton, alberta, canada 4. maestro m, melgar a, de la cruz j, perapoch j, mosqueda r, pallás c. cuidados centrados en el desarrollo. situación en las unidades de neonatología de españa. anales de pediatria. 2004; 81:232-40. 5. pallás cr, losacco v, maraschini a, greisen g, pierrat v, warren i et al. parental involvement and kangaroo care in european neonatal intensive care unit: a policy survey in eight countries. pediatric critical care medicine. 2012; 13:568-77. 6. miles ms, funk sg, carlson j. parental stressor scale: neonatal intensive care unit. nursing research. 1993; 42:148–152. 7. mitchell-dicenso a, guyatt g, paes b, blatz s, kirpalani h, fryers m, hunsberger m, et al. a new measure of parent satisfaction with medical care provided in the neonatal intensive care unit. journal of clinical epidemiology. 1996; 49:313–318. developmental observer • 2018 • 7 comfort. journal articles addressing ssc and touch were posted to the online staff communication forum. although attempts to engage staff in online critical analysis of the articles were difficult, staff engaged in dialogue about article content during education sessions. low-fidelity mannequins were used to conduct ssc and standing transfer simulations to support staff in learning to navigate the challenging physical constraints of the environment and problem-solve issues that may arise in a safe and anticipatory manner. once approximately one-third of staff had participated, simulations were no longer deemed necessary by staff. the focus changed from simulations to learning through peer mentorship, with multidisciplinary ssc champions guiding the team inthe-moment. those comfortable and supportive of the initiative acted as champions for knowledge translation, modelled the safety and efficacy of the initiative, and began to foster this as a socially acceptable change in practice. a questionnaire will be distributed to staff to assess attitudes and perceptions surrounding the integration of ssc and alternative touch methods into practice. an audit tool is being developed to assess ssc and alternative touch frequency and to capture challenges experienced by staff and parents. results will guide continual improvement and future direction. summary the initiative was applied systematically due to the medical complexity and high acuity of the tenuous patient population, the human and material resources needed to facilitate ssc, the challenging physical environment, and staff apprehensions. the healthcare team’s clinical judgment was respected in establishing the balance of the infant’s medical care with the equally important neurodevelopmental and social-emotional needs to determine the most appropriate and feasible type of touch over time, which fostered participation in the initiative. the fluidity and adaptability in the initiative was critical to providing responsive, infant-centered, and family-inclusive care at all stages of the infant’s illness and convalescence. adoption of these practices has not been fully embraced by all staff. continued efforts must focus on supporting staff integration of ssc and touch as essential, routine components of care. it is anticipated the benefits of ssc for cardiac and surgical infants will parallel those observed in the preterm and healthy term populations. delineating neurodevelopmental outcomes specifically attributed to ssc and alternative touch methods may be challenging given the many potential confounders. future research and discussion regarding the impact of these interventions on the neurodevelopmental outcomes of infants in the surgical nicu is warranted. references 1. graven sn, browne j v. sensory development in the fetus, neonate, and infant: introduction and overview. newborn and infant nursing reviews. 2008; 8(4):169-172. 2. vandenberg ka. individualized developmental care for high risk newborns in the nicu: a practice guideline. early human development. 2007; 83(7):433-442. 3. als h, duffy fh, mcanulty gb, et al. early experience alters brain function and structure. pediatrics. 2004; 113(4):846-857. 4. saigal s, doyle lw. an overview of mortality and sequelae of preterm birth from infancy to adulthood. lancet. 2008; 371(9608):261-269. 5. burnett ac, scratch se, anderson pj. executive function outcome in preterm adolescents. early human development. 2013; 89(4):215-220. 6. marlow n, wolke d, bracewell ma, samara m, for the epicure study group. neurologic and developmental disability at six years of age after extremely preterm birth. new england journal of medicine. 2005; 352(1):9-19. 7. reynolds lc, duncan mm, smith gc, et al. parental presence and holding in the neonatal intensive care unit and associations with early neurobehavior. journal of perinatology. 2013; 33(8):636-641. 8. laing s, mcmahon c, ungerer j, taylor a, badawi n, spence k. mother–child interaction and child developmental capacities in toddlers with major birth defects requiring newborn surgery. early human development. 2010; 86(12):793-800. 9. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology. 1997; 21(3):178-189. 10. welch mg, firestein mr, austin j, et al. family nurture intervention in the neonatal intensive care unit improves social relatedness, attention, and neurodevelopment of preterm infants at 18 months in a randomized controlled trial. journal of child psychology and psychiatry. 2015; 56(11):1202-1211. 11. craig jw, glick c, phillips r, hall sl, smith j, browne j. recommendations for involving the family in developmental care of the nicu baby. journal of perinatology. 2015; 35,s1:s5-s8. 12. landry sh, smith ke, swank pr. responsive parenting: establishing early foundations for social, communication, and independent problem-solving skills. developmental psychology. 2006; 42(4):627-642. 13. conde-agudelo a, díaz-rossello jl. kangaroo mother care to reduce morbidity and mortality in low birthweight infants. cochrane database systematic reviews. 2016; (8):cd002771. 14. nyqvist kh, anderson gc, bergman n, et al. towards universal kangaroo mother care: recommendations and report from the first european conference and seventh international workshop on kangaroo mother care. acta paediatrica. 2010; 99(6):820-826. 15. feldman r, rosenthal z, eidelman ai. maternal-preterm skin-to-skin contact enhances child physiologic organization and cognitive control across the first 10 years of life. biological psychiatry. 2014; 75(1):56-64. 16. charpak n, tessier r, ruiz jg, et al. twenty-year follow-up of kangaroo mother care versus traditional care. pediatrics. 2017; 139(1):e20162063. 17. baley j, newborn committee on fetus and newborn. skin-to-skin care for term and preterm infants in the neonatal icu. pediatrics. 2015; 136(3):596-599. 18. wernovsky g. current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. cardiology in the young. 2006; 16(s1):92-104. 19. freed dh, robertson cmt, sauve rs, et al. intermediate-term outcomes of the arterial switch operation for transposition of great arteries in neonates: alive but well? journal of thoracic and cardiovascular surgery. 2006; 132(4):845-852.e2. 20. alton gy, robertson cmt, sauve r, et al. early childhood health, growth, and neurodevelopmental outcomes after complete repair of total anomalous pulmonary venous connection at 6 weeks or younger. journal of thoracic and cardiovascular surgery. 2007; 133(4):905-911.e3. 21. laing s, walker k, ungerer j, badawi n, spence k. early development of children with major birth defects requiring newborn surgery. journal of paediatric and child health. 2011; 47(3):140147. 22. feldman r, singer m, zagoory o. touch attenuates infants’ physiological reactivity to stress. developmental science. 2010; 13(2):271-278. 23. westrup b, sizun j, lagercrantz h. family-centered developmental supportive care: a holistic and humane approach to reduce stress and pain in neonates. journal of perinatology. 2007; 27(s1):s12-s18. 24. browne j v, talmi a. family-based intervention to enhance infant-parent relationships in the neonatal intensive care unit. journal of pediatric psychology. 2005; 30(8):667-677. statement of financial support valerie levesque, krystal johnson, amy mckenzie, andrea nykipilo, barbara taylor, andrea goldsmith, and chloe joynt have no financial relationships with commercial entities to disclose. 8 • 2018 • developmental observer background in september 2013, the 20 bed level ii newborn intensive care unit (nicu) at south health campus (shc) opened. this hospital is unique in calgary in that the mission statement of the care provided at the hospital is based on four pillars of innovation, wellness, collaborative practice and patient/family centered care. these pillars are well aligned with the principles of nidcap. most nicus in alberta do not have dedicated full time equivalent (fte) positions for occupational therapy (ot) or physical therapy (pt) services and provide care only by consultation. in accordance with the mission statement of shc, pediatric ot and pt roles were developed, and dedicated positions were allocated for both of these allied health professionals. in december 2015, a 0.6 fte ot was hired, followed by a 0.5 fte physical therapist in july 2016. their roles were to support the nicu and the two outpatient pediatric clinics for consultation including feeding, musculoskeletal conditions and plagiocephaly. additionally, these therapists, in conjunction with the site lead neonatologist, agreed to pilot a program in the nicu beginning in november 2016. for this program, the therapists assess all babies born at less than 34 weeks gestation and weighing less than 1500 grams using the test for infant motor performance (timp) prior to discharge at approximately 36 weeks post-menstrual age (pma). the nicu therapists also supported the outpatient pediatrics clinic where some nicu graduates are seen by parent choice, usually due to proximity to their home. parents were encouraged to ask for developmental support if needed; the pediatrician made referrals to ot and pt when indicated. the therapists also started a developmental play group for families who were receiving individual care. parents attended every two weeks for six sessions. the play group allowed for more frequent visits, while being more financially and time efficient for the therapists. objectives • use the timp as a framework for assessing motor development in the nicu and post-discharge for babies with increased risk for developmental delay. • educate parents about typical development and how to promote motor development through play. • provide a seamless model of developmental care from nicu to home. • highlight opportunities for developmental play at home. approach all babies born less than 34 weeks gestation weighing less than 1500 grams were offered a timp assessment which was done at approximately 36 weeks pma at the earliest, and was typically done in the week prior to discharge home. if the baby was discharged home over a weekend and the assessment was missed, it could be completed in the pediatric clinic post-discharge if they were referred to the pediatric clinic at shc. if they had a community pediatrician, this was not possible. parents were encouraged to be present for the assessment. after the assessment, the age equivalent score was provided to the parents as well as some specific developmental suggestions for play, based on the assessment results. a general developmental play handout was developed and provided to the caregiver and reviewed to ensure understanding. parents were given the therapist contact information and were encouraged to contact therapists if there were further questions or concerns. babies who attended the pediatric clinic also had the opportunity to be involved with a biweekly play group. all allied health professionals were available to consult at the play sessions, with pt and ot present at every play session. the play group offered not only the opportunity for discussion about motor development, but was also helpful to parents in accessing community services, forming relationships and establishing a support network. parents’ evaluations of the playgroups were very positive. timp results and parent evaluation forms from the playgroup were collected. conclusion initially, there was no defined role for either the ot or pt to participate in daily care in the nicu other than for specific consultations for feeding, musculoskeletal conditions (e.g., club foot, brachial plexus injury) or plagiocephaly concerns. this program at the shc site highlights the importance of developmental care in promoting motor development for preterm and very low birth weight infants not only in the nicu, but also after discharge home. parents are gaining a greater understanding about the importance of developmental play from a very early age, as well as how to understand the foundational nature of achieving developmental milestones. parents are also supported in providing developmentally appropriate play opportunities for their children and help foster improved parent-child interaction. references 1. campbell sk & hedeker d. validity of the test of infant motor performance for discriminating among infants with varying risk for poor motor outcome. journal of pediatrics. 2001;139 (4):546-551. 2. rose ru & westcott sl. responsiveness of the test of infant motor performance (timp) in infants born preterm. pediatric physical therapy. 2005(17):219-224. 3. noble y & boyd r. neonatal assessments for the preterm infant up to 4 months corrected age: a systematic review. developmental medicine and child neurology. 2012(54):129-139. 4. dusing sc, brown se, van dres cm, thacker lr & hendricks-munoz kd. supporting play from timp to toddler: developmental care from nicu to home allison massey1 and anna wiens2 1 pediatric physical therapist, south health campus, alberta health services, calgary, alberta, canada 2 pediatric occupational therapist, south health campus, alberta health services, calgary, alberta, canada developmental observer • 2018 • 9 background having a preterm or full-term baby in the nicu is a stressful and emotional time for families. often the most effective family support comes from connecting with other families who have had a similar lived experience. such peer support has been a priority of the stollery children’s hospital’s nicu family advisory care team (fact) since its inception in 2010. objective • create a nicu family mentor program methods following success of the stollery family bedside orientation program, a one-to-one bedside peer support program on an inpatient pediatric unit, the nicu family mentor program was created in the 69 bed, non-surgical nicu in june, 2016. the program was designed to further a culture of patient and family centered care, by supporting families in providing care for their infant and engaging with their child’s healthcare team through meaningful interactions between inpatient families and peer mentors. family mentors are recruited through the stollery patient & family centered care (pfcc) network and through a facebook page for nicu graduates. interested parents are considered for the family mentor role if they had experience with a child in the nicu and can commit 10-12 volunteer hours per month over a year. family mentors complete eight hours of training and an interview with the stollery pfcc coordinator to learn more about peer mentoring and explore their readiness to support families at the bedside. training includes in-class instruction and role playing activities which emphasize peer mentor skills and attributes, such as: • strong listening and communication skills. • awareness of the role and of the responsibilities and boundaries of a peer mentor. • ability to support families by using inclusive language and without passing judgment, creating emotional dependency or influencing family decisions. • ability to recognize when it is necessary to debrief or ask for help from a stollery pfcc staff member or a health care professional. all family mentors are brought on as hospital volunteers which requires completing criminal record and vulnerable sector clearances, reference checks, baseline health screening, and signing a confidentiality agreement before interacting with families. novice family mentors complete their first three volunteer shifts in tandem with a veteran family mentor before independently visiting families. family mentors visit inpatient families at their infant’s bedside every two weeks and engage them by being a listening presence and having open, honest, judgement free conversations fostering strength, empowerment and hope in the inpatient family. at the beginning of each shift, family mentors check in with the charge nurse or unit social worker to learn which families are new to the unit and could benefit from a visit. other pertinent information is also shared at this time. this professional oversight helps prevent family mentors from accidentally entering into emotionally volatile or intense situations requiring conduct and expertise beyond the scope of their role. family mentors begin each visit by introducing themselves and the family mentor program. they emphasize their role as non-medical staff available to provide a listening presence for families. as well as acting in this role, family mentors aim to enhance family knowledge with information about: • the unit and hospital environment. • best practices for patient safety. • how to participate in a child’s care and care team. a formal evaluation of the family mentor program will soon be available. anecdotal evidence collected from inpatient families and staff members indicate the program has had a positive effect. many families indicated their appreciation of family mentor visits and one staff member remarked, “it’s good to see family mentors here. we have lots of new families who could use a visit.” expanding the program to provide peer support for breastfeeding mothers and for families on the antepartum unit is currently being explored. conclusion the family mentor program is a promising model supporting families in their role of actively caring for their infant children and participating in their health care decisions. through this program, one-to-one bedside peer support has become a complementary but essential resource available to families navigating what at times can be a complex and challenging experience. statement of financial support the authors have no financial relationships with commercial entities to disclose. implementation of a newborn intensive care unit (nicu) family mentor program christie oswald1 and sarah topilko1 1 coordinator of patient & family centered care, stollery children’s hospital, edmonton, alberta, canada exploration and early development intervention from nicu to home: a feasibility study. pediatric physical therapy. 2015:(27):267-274. 5. dusing sc, lobo ma, lee h-m, & galloway jc. intervention in the first weeks of life for infants born late preterm: a case series. pediatric physical therapy. 2013(25):194-203. statement of financial support allison massey and anna wiens have no financial relationships with commercial entities to disclose. 10 • 2018 • developmental observer introduction preterm babies in the nicu are exposed to acute and chronic pain. parents are concerned about the pain of their baby and this concern is associated with a higher level of parental stress. parents want greater involvement in infant pain prevention and management. the edin scale is used by nurses to evaluate prolonged pain and includes only behavioral items routinely observed by parent and nurse caregivers during everyday care (e.g., quality of sleep, facial expression, body movements, interaction with the caregivers, consolability). objectives • primary objective: evaluate the feasibility of parental involvement in the use of the edin scale by comparing edin scores, contemporaneously and blindly recorded by the attending nurse (edin-n) and by the mother (edin-m). • secondary objective: assess the level of mother’s stress at the time of nicu discharge by the administration of the parental stress scale (nicu). methods study design an experimental clinical prospective monocentric study design was employed in a level 3 nicu that provides nidcap-based care and is open 24 hours a day to parents. inclusion criteria encompassed newborns receiving pain assessment using the edin scale according to nicu protocol and for whom informed consent was obtained. non-italian native-speaking mothers and mothers unable to stay for at least four hours with their baby during at least one of the three nursing shifts (morning, afternoon or night shift) were excluded. study phases within the first week of hospitalization, the mother or both parents met with two nidcap professionals and one nurse. during this meeting, the booklet, “how to help our children to prevent stress and pain in the nicu”, supported by multimedia materials subsequently given to parents, was used to show parents how to recognize pain with special attention to the items of the edin score and how help to relieve pain. within one week following the first meeting, a second meeting was proposed to reinforce the information and to clarify doubts. at discharge the mother’s stress level was measured by a psychologist using the parental stress scale (nicu). data collection and analysis maternal and newborn data were collected and recorded in an excel database file. the type of respiratory support, sedation, surgery, venous lines, feeding mode, postnatal age, and any painful maneuvers were also recorded. data were analyzed by statistical package spss 13.0. non-parametric statistics were used to analyze edin scores that did not fit normal distribution. an alpha error < 5% was considered significant. results here we present preliminary data on 179 edin scores that were contemporaneously recorded by nurses and mothers (8) in twelve newborns at a mean postnatal age of 34±15 days of life (range 11 to 70). mean birth weight of recruited newborns was 1300±500 grams. overall, both edin-n (median 0, range 0-3) and edin-m (median 2, range 0-12) were below the threshold of pain. edin-m were significantly higher compared with edin-n (mann-whitney test, p=0.000, fig. 1). the difference between edin-m and edin-n is shown in fig. 2. in 24% of cases, edin-m and edin-n were identical, in 64% of cases edin-m was higher than edin-n, and only in 12% of cases edin-n was higher than edin-m. edin-m, but not edin-n, showed a positive significant correlation with painful maneuvers performed during the period of edin score recording (spearman’s rho, p=0.041). edin-n, but not edin-m were significantly lower (p=0.02 for edin-n) in the morning compared with the afternoon. the mother’s level of stress measured by the parental stress scale at discharge was not statistically different from a score obtained from a comparable group of 14 mothers (71±15.6 versus 60.56 ±16.1, p=0.02) studied before the beginning of this study protocol. conclusions mothers willingly agreed to participate in the study and their level of stress at discharge was comparable with that of mothers not participating at the study. even when both median edin-n and edin-m were below the threshold of pain, mothers’ scores the edin pain scale administered by mothers in the newborn intensive care unit (nicu): validation of a new pain assessment model natascia simeone1, elena baudassi2, sara grandi2, francesca fabbri1, tania pesaresi3, marco salonia4, sandra lazzari5, anna tarocco2, alessandra montesi6, elisa facondini6 and gina ancora2,7 1 rn, nidcap professional, nicu, ospedale infermi, rimini, italy 2 neonatologist, nicu ospedale infermi, rimini, italy 3 staff registered nurse, nicu ospedale infermi, rimini, italy 4 family representative, nicu, ospedale infermi, rimini, italy 5 nurse manager, nicu, ospedale infermi, rimini, italy 6 psychologist, nicu, ospedale infermi, rimini, italy 7 chief of neonatology, nicu, ospedale infermi, rimini, italy developmental observer • 2018 • 11 were more modulated compared with nurses’ scores. moreover, edin-m scores correlated more with painful procedures. nurses, but not mothers, attributed lower pain scores during the morning compared with the afternoon shift, maybe underscoring signs of pain and stress during hours with higher level of activity. our data confirm those reported by other authors who suggested an ‘‘institutional insensitivity’’ of health professionals to signs of stress and pain in infants, with health professionals becoming slightly habituated to patient pain signs due to extended exposure. references 1. debillon t, zupan v, ravault n, magny jf, dehan m. development and initial validation of the edin scale, a new tool for assessing prolonged pain in preterm infants. archives of disease in childhood fetal & neonatal edition. 2001; 85(1):f36-41. 2. franck ls, oulton k, nderitu s, lim m, fang s, kaiser a. parent involvement in pain management for nicu infants: a randomized controlled trial. pediatrics. 2011; 128(3):510-8. 3. gale g, franck ls, kools s, lynch m. parents’ perceptions of their infant’s pain experience in the nicu. international journal of nursing studies. 2004; 41(1):51-8. 4. montirosso r, fedeli c, del prete a, calciolari g, borgatti r; neo-acqua study group. maternal stress and depressive symptoms associated with quality of developmental care in 25 italian neonatal intensive care units: a cross sectional observational study. international journal of nursing studies. 2014; 51(7):994-1002. 5. pillai riddell rr, craig kd. judgments of infant pain: the impact of caregiver identity and infant age. journal of pediatric psychology. 2007; 32(5):501-11. 6. vinall j, miller sp, synnes ar, grunau re. parent behaviors moderate the relationship between neonatal pain and internalizing behaviors at 18 months corrected age in children born very prematurely. pain. 2013; 154(9):1831-9. statement of financial support all authors have no financial relationships with commercial entities to disclose. figure 1. figure 2. • parental examples of “three words to describe your baby”: º silly, quiet, explorer º strong, beautiful, blessing º feisty, precious, demanding º mighty, determined, responsive (aware, receptive) references 1. cherry a, blucker r, thornberry t, hetherington, c, mccaffree m a, & gillaspy s. postpartum depression screening in the neonatal intensive care unit: program development, implementation, and lessons learned. journal of multidisciplinary healthcare. 2016;59. 2. gillaspy s, tahirkheli n, cherry a, mccaffree m a, & tackett a. postpartum depression on the neonatal intensive care unit: current perspectives. international journal of women’s health. 2014;975. 3. griffin t & celenza j. family-centered care for the newborn: the delivery room and beyond. 2014; new york, ny: springer publishing company, llc. 4. guillaume s, michelin n, amrani e, benier b, durrmeyer x, lescure s, caeymaex l. parents’ expectations of staff in the early bonding process with their premature babies in the intensive care setting: a qualitative multicenter study with 60 parents. bmc pediatrics. 2013:18. 5. kearvell h & grant j. getting connected: how nurses can support mother/infant attachment in the neonatal intensive care unit. australian journal of advanced nursing. 2010;27(3):75. 6. paul c & salo ft. the baby as subject: clinical studies in infant-parent therapy. 2014; london: karnac. 7. slate a. keeping the baby in mind: a critical factor in perinatal mental health. zero to three. june/july 2001;10-16. 8. orzalesi m & aite l. communication with parents in neonatal intensive care. the journal of maternal-fetal & neonatal medicine. 2011;24(sup1):135-137. 9. twohig a, reulbach u, figuerdo r, mccarthy a, mcnicholas f & molloy e j. supporting preterm infant attachment and socioemotional development in the neonatal intensive care unit: staff perceptions. infant mental health journal. 2016;37(2):160-171. statement of financial support jessica bowen and jean powlesland have no financial relationships with commercial entities to disclose. nicu baby love letters continued from page 3 12 • 2018 • developmental observer background inconsistency in the application of neurodevelopmentally supportive practices continue to be reported in the literature with implementation described as sporadic, variable from setting to setting as well as from one professional to the next.1 foundational education is recognized as a core component supporting the provision of care,2 yet clinicians frequently do not receive adequate training to differentiate the nuances of infant behavioral communication nor to implement practice change associated with neuroprotective care.3 a gap continues to exist between high level specialist neurodevelopmental care training and the capacity for this training to be offered in all newborn settings. foundational training programs offer an opportunity to train a broad population and establish a framework for specialization. objectives • identify the value for nidcap training centers to facilitate foundational developmental care education programs. • consider how foundational education programs can help support practice change. methods in 2017 a center in australia implemented a foundational neurodevelopmental care program designed and delivered by certified nidcap professionals. the program is presented as an interactive 1.5 day workshop. six essential themes are explored in the program which embraces a relationship-based approach to care. the themes include: • development: fetal and infant growth and development and the influence of experience on development. • observation: the importance of seeing and responding to the baby in clinical practice. • family: family participation is essential for the successful implementation of neuroprotective care. • reflection: self-knowledge and learning through experience. • systems: strengths and challenges in work environments. • evidence: best available evidence to support neuroprotective care. since its commencement in february 2017, 66 neonatal unit staff (refer to figure one) have attended the program. feedback from the program has been overwhelmingly supportive with expansion of the program in june 2017 to other states in australia and to new zealand. program attendees were surveyed and asked to identify their level of confidence on a five-point likert scale in delivering individualized developmentally supportive care prior to and immediately post completion of the training. forty eight (72%) of the 66 attendees completed the survey. nurses indicated the overall lowest level of confidence in delivering developmentally supportive care prior to undertaking the program 3.5/5 (average confidence level). fifty two percent of respondents indicated a one point increase in confidence after completing the program, with 12% identifying a two point increase and 33% not identifying an effect on their confidence levels. the overall program was rated as very good by 81% of respondents with the remaining 18% rating the program as good. eighty one percent of respondents identified they were likely to implement components from the program in their clinical practice or work environment. one hundred percent found the program content relevant to their profession and role in the newborn unit. following completion of the program, participants are enrolled in a graduate group and sent a monthly newsletter and journal articles to promote ongoing engagement. a follow-up survey was circulated to program graduates three months after program completion to explore translation of program concepts to clinical practice and clinician/unit based promotion of practice change. two units in the follow up survey had implemented unit based developmental care work groups (pediatric intensive care and pediatric cardiac unit) to address practice inconsisimplementing a foundational newborn neurodevelopmental education program: one center’s experience nadine griffiths1, kaye spence1, inga warren2 and monique oude reimer-vankilsdonk3 1 clinical nurse consultant, grace centre for newborn care, sydney children’s hospital network (westmead) australia 2 senior nidcap trainer affiliated with the uk nidcap training center, uclh, london, uk 3 registered nurse and nidcap consultant, sophia nidcap training centre, children’s hospital, rotterdam, the netherlands figure 1. outlines program attendance numbers for professional groups developmental observer • 2018 • 13 tencies and promote evidence based practice. a speech therapy department reviewed positioning of infants during procedures and incorporated supportive positioning techniques identified in the program. respondents identified, ‘i personally have noticed a significant change in my daily nursing practice already’, ‘i see babies in ways i hadn’t noticed before’ and ‘this should be a program all staff in neonatal units attend’. conclusions implementation of a robust foundational neurodevelopmental education program was found to reinvigorate staff interest in developmentally supportive practice, dispel myths and link evidence to clinical care, promote nidcap and raise the profile of a training center and its staff while also providing financial revenue to support maintenance of the center. references 1. milette i, martel mj, ribeiro da silva m & coughlin mcneil m. guidelines for the institutional implementation of developmental neuroprotective care in the neonatal intensive care unit. part a: background and rationale. a joint position statement from the cann, capwhn, nann and coinn. canadian journal of nursing research. 2017; 49(2):46-62. 2. milette i, martel mj, ribeiro da silva m & coughlin mcneil m. guidelines for the institutional implementation of developmental neuroprotective care in the neonatal intensive care unit. part b: recommendations and justification. a joint position statement from the cann, capwhn, nann and coinn. canadian journal of nursing research. 2017; 49(2):46-62. 3. d’agata al, sanders mr, grasso dj, young ee, cong x & mcgrath jm. unpacking the burden of care for infants in the nicu. infant mental health journal. 2017; 38(2):306-317. statement of financial support nadine griffiths, kaye spence, inga warren, and monique oude reimer-van kilsdonk have no financial relationships with commercial entities to disclose. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nnacpdirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org 14 • 2018 • developmental observer neurobehavioral disorganization (nbd) as a result of targeted newborn echocardiography (tne) in extremely preterm infants – a pilot study asma nosherwan1,2, kumar kumaran1,2 and juzer m. tyebkhan1,2 1 stollery children’s hospital, edmonton, alberta, canada 2 university of alberta, edmonton, alberta, canada background stress is a disturbance of the dynamic equilibrium between body systems and environment. repeated stress, inherent in the newborn intensive care unit (nicu), is related to negative consequences for extremely preterm infants. various tools are available to identify stressful responses to caregiving in the nicu. these tools could also help clinicians reduce the stress of various interventions. stress is inferred from the observation of neurobehavioral disorganization (nbd), although the different tools differ in their ability to recognize subtle signs of nbd. the synactive theory of development provides a framework whereby changes in infant neurobehavior can be interpreted in the context of ongoing interventions.1 the newborn individualized developmental care and assessment program (nidcap®) model of caregiving is based on the synactive theory and requires caregivers to be observant of these subtle signs of nbd. targeted neonatal echocardiography (tne) is frequently used for cardiovascular management of extremely preterm infants. methods to help infants experience less pain and stress during tne include oral sucrose or sucking on a pacifier with or without facilitated tucking.2 it has been suggested that tne is neither painful nor disruptive for preterm infants,3 however, our observations of very preterm infants undergoing tne were that it often caused profound nbd, leading to this pilot study. objective • document nbd caused by tne in extremely preterm infants. methods a convenience sample included preterm infants born at less than 28 weeks gestational age, who underwent tne when investigators were available. infants were assessed using the nidcap® naturalistic observation and were video recorded before, during and after tne. neurobehavioral functioning and pain assessments were carried out using the assessment of behavioral systems organization (abso),4 the behavioral indicators of infant pain (biip),5 and the astrid lindgren and lund children’s hospital pain and stress assessment neonatal (alps-neo).6 all tne’s were performed by one investigator trained in tne (an). all neurobehavioral assessments were performed by another investigator certified in nidcap and apib (assessment of preterm infants' behavior) (jmt). bedside caregivers were not guided to provide neurobehavioral facilitation, but were free to provide whatever support they felt necessary. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, april 29, 2017 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 developmental observer • 2018 • 15 results seven infants born at 26 weeks or earlier were included in the study. age at time of tne varied from four days to five weeks. abso and alps-neo scores indicated fairly high degrees of nbd at baseline. nidcap observations indicated nbd increased during and after tne, although the numerical value of the scoring systems used for this study did not change significantly. for example: a) abso scores for autonomic /motor/state were values of 8/8/8 pre-tne, increasing to 9/9/9 both during and posttne. b) alps-neo scores were a value of 10 pre-tne and remained 10 and 10 during and post-tne. c) biip scores were difficult to assign accurately, as facial behaviors which are a key part of this scoring were often not well seen due to bedding, tne operator’s hands and/or the probe. most babies entered the aa state (severe autonomic and motor dysregulation leading to removal from the sleep-wake state continuum) during tne and many did not recover from the aa state post tne. the biip does not include the aa state in its descriptors. abso and alps-neo do include aa state, but many babies were already at scores of 10, the maximal possible score, for reasons such as motor flaccidity; thus moving into the aa state did not increase their score. conclusions a) more attentive, individualized supportive care is required at baseline for very preterm infants in the nicu, given the high scores reflective of pre-tne nbd. b) tne was associated with increased nbd in the extremely preterm infant, which was often due to the infant entering the aa state. c) the scoring systems used in this pilot study were not sensitive enough to accurately portray the increased nbd. the following actions will be considered in the future: 1) determine the most accurate method of documenting nbd during tne, keeping in mind assessment methods should recognize the aa state as that of profound nbd. 2) disseminate results to clinicians using tne in their practice. 3) provide caregiver support tailored to individualized, dynamic neurobehavioral status during tne as this may prevent the severe nbd that was observed. the recently published validity and reliability of the evaluation of intervention scale (evin tool) may be useful as a means of providing such facilitation, and will be the subject of further study.7 references 1. als h. toward a synactive theory of development. infant mental health journal. 1982; 3(4):229-243. 2. potana nt, dongara ar, nimbalkar sm, patel dv, nimbalkar as, phatak. oral sucrose for pain in neonates during echocardiography. indian pediatrics. 2015;52(6):493-497. 3. lavoie pm, stritzke a, ting j, jabr m, jain a, kwan e, chakkarapani e, brooks p, brant r, mcnamara pj, holsti l. rct of use of oral glucose with or without gentle facilitated tucking of infants during neonatal echocardiography. plos one. 2015;10(10):e0141015. 4. als h. assessment of behavioral system’s organization. nidcap federation international, 2006. 5. holstii l & grunau re. initial validation of the behavioral indicators of infant pain (biip). pain. 2007; 132(3):264-272. 6. lundquist p, kleberg a, edberg ak, larsson ba, hellstrom-westas l, norman e. development and psychometric properties of the swedish alps-neo pain and stress assessment scale for newborn infants. acta paediatrica. 2014;103(8):833-839. 7. warren i, hicks b, kleberg a, ellahoo j, anand kj, hickson m. validity and reliability of the evaluation of intervention scale: preliminary report. acta pediatrica. 2016;105(6):618-622. statement of financial support the authors have no financial relationships with commercial entities to disclose. the nfi thanks its current sponsor, dr. brown's for their continued support which helps the nfi raise global awareness of the need for nidcap care and enhances opportunities to develop educational programs to broaden the reach of this care to more and more nicu professionals and the ‘preterm families’ they serve. for decades, parents have relied on dr. brown’s® products to make sure their babies receive the best nutrition from the start, including longtimefavorite natural flow bottles that help reduce feeding problems like colic, spit-up, burping and gas. now, the new dr. brown’s® medical product line extends the same dr. brown’s® healthy benefits to families with babies who have feeding issues, in addition to the medical professionals who play a critical role in infant development. our current sponsor 16 • 2018 • developmental observer background the burden of stress the human body endures during critical periods of development is postulated as having implications in the development of later life mental health and physical illnesses.1-3 risks from early life developmental adversity are linked to later life illnesses and diseases of the cardiovascular and endocrine systems, as well as mental health illness.4-8 an early life stress experience that often receives inadequate attention, yet may be of considerable later life consequence, is the caregiving environment of the newborn intensive care unit (nicu). while nicu care is often lifesaving, the intensity and chronicity of these experiences are evolutionarily unexpected and occur during a period of developmental vulnerability. stress exposure from necessary care in the newborn intensive care unit (nicu) can have profound effects on infant brain development. interpreting neurodevelopmental effects from adverse early life experiences in the nicu can be challenging. objectives • explore whether established term infant neurobehavioral profiles may be used to characterize a preterm nicu infant cohort. • examine the potential of longitudinal nicu stress exposure to further discriminate profiles. methods a sample of 41 preterm nicu infants, previously described in the primary study,9 was analyzed for stress exposure and neurodevelopmental functioning. the primary study explored the relationships between neurodevelopmental outcomes at nicu discharge, fkbp5 genotype and nicu stress exposure. an established algorithm was applied to investigate membership of preterm infants at near term age within three neurobehavioral profiles. total 21-day and weekly average stress were also examined and found to be correlated to infant neurobehavioral profiles. descriptive demographic data and stress data were analyzed using ibm© spss® statistics, version 22.0. the nnns neurobehavioral profiles were analyzed using the algorithm in r statistical software.10 finally, multivariate analysis was used to discriminate the probability of niss stress scores by week (week one, week two, week three) to predict if the preterm profiles were similar to the healthy infant profiles. results there were significant differences in the distribution of membership within the developmental profiles between preterm infants and healthy full-term infants. an interaction was found between the membership with the three profiles and time within mean range of stress value. using pearson chi-square test, there was a statistically significant difference (p = 0.02) in the distribution of neurobehavioral profiles between the sample of preterm nicu infants and the comparison to the healthy full-term infant sample from the sucharew study11. while statistically significant results were not detected (p = 0.11) for preterm infants in the mean value for 21 days of stress across the three profiles, the mean stress score was lowest for the preterm infants categorized into profile 1 (social/easy-going) and the highest mean stress scores for infants categorized into profile 2 (hypotonic). there was a statistically significant interaction (p = 0.03) between the three neurobehavioral profiles and the mean value of weekly average stress. conclusions preterm infants’ neurobehavioral functioning may be classified with these neurodevelopmental profiles to better understand the influence of early life experiences. interestingly, the comparison of preterm profiles to the term profiles identified by sucharew et al.,11 demonstrates a reversed yet near exact matched percentage of profile 1 (easy-going) and profile 2 (hypotonic), while the profile 3 (difficult) percentage remains consistent between the two groups. stress exposure in the nicu has the potential to discriminate nnns profile membership. references 1. shonkoff jp, garner as, siegel bs, et al. the lifelong effects of early childhood adversity and toxic stress. pediatrics. 2012; 129(1):e232-e246. 2. daskalakis np, bagot rc, parker kj, vinkers ch, de kloet er. the three-hit concept of vulnerability and resilience: towards understanding adaptation to early-life adversity outcome. psychoneuroendocrinology. 2013; 38(9):1858-1873. 3. mclaughlin ka, sheridan ma, alves s, mendes wb. child maltreatment and autonomic nervous system reactivity: identifying dysregulated stress reactivity patterns using the biopsychosocial model of challenge and threat. psychosomatic medicine. 2014; 76(7):538-546. 4. goosby bj, cheadle je, mcdade t. birth weight, early life course bmi, and body size change: chains of risk to adult inflammation? social science & medicine. 2016; 148:102-109. 5. kemppainen km, ardissone an, davis-richardson ag, et al. early childhood gut microbiomes show strong geographic differences among subjects at high risk for type 1 diabetes. diabetes care. 2015; 38(2):329-332. 6. johnson s, wolke d. behavioural outcomes and psychopathology during adolescence. early human development. 2013; 89(4):199-207. 7. godfrey km, costello pm, lillycrop ka. the developmental environment, epigenetic biomarkers and long-term health. journal of developmental origins of health and disease. 2015; 6(5):399-406. 8. heindel jj, balbus j, birnbaum l, et al. developmental origins of health and disease: integrating environmental influences. endocrinology. 2015; 156(10):3416-3421. 9. d'agata al, walsh s, vittner d, cong x, mcgrath jm, young ee. fkbp5 genotype and early life stress exposure predict neurobehavioral outcomes for preterm infants. developmental psychobiology. 2017; 59(3):410-418. 10. team rc. r: a language and environment for statistical computing. 2015; https://www.rproject.org. 11. sucharew h, khoury jc, xu y, succop p, yolton k. nicu network neurobehavioral scale profiles predict developmental outcomes in a low-risk sample. paediatric and perinatal epidemiology. 2012; 26(4):344-352. statement of financial support the authors have no financial relationships with commercial entities to disclose. comparison of established neurobehavioral profiles for healthy infants to preterm nicu infants amy d’agata1,2, stephen walsh1, dorothy vittner1,3 and jacqueline m. mcgrath1,3 1 university of connecticut, storrs, connecticut, usa 2 university of south florida, tampa, florida, usa 3 connecticut children’s medical center, hartford, connecticut, usa developmental observer • 2018 • 17 background parental presence and active participation in caregiving improves both shortand long-term outcomes for preterm infants requiring nicu care.1,2 parents with higher levels of engagement also experience benefits, including lower rates of depression, reduced levels of stress, increased confidence in parenting and responsiveness to infant cues, and improved attachment to their infant when compared to parents whose nicu presence is limited.3,4 the provision of free parking is one means of helping parents to be active partners in the care of their infant. it is also one of several accessibility interventions described in the nidcap nursery assessment and certification program’s (nnacp) nursery assessment manual.5 there has been limited research into this intervention to date.6 no association has been found between the provision of free parking, increased parental presence, and length of stay but there are confounding variables which limit the applicability of this particular study. objectives • provide rationale for the following: o active parental participation in care should be considered part of the treatment provided for preterm infants. o facilitating parents’ presence in the nicu should be a high priority objective for improving care and outcomes. o free parking is one method which may increase parental presence and participation in care. • describe strategies used in our attempts to acquire free parking for parents. • describe the work in progress and our plans to achieve this goal. methods a previous attempt to secure free parking was made in 2011 during the first world prematurity day. presentations were given on this topic and a petition was signed by families and staff at all nicu sites across the city. unfortunately, systemic changes at senior management levels meant the petition was not presented to the appropriate authorities and free parking was not made available for families. this initiative became a priority project in 2016 for our nicu family advisory council team (fact), which includes parents and staff working on various initiatives through a progressive and collaborative approach. our first task was to gather data regarding parking use and parental perceptions. parents are currently eligible for discounted monthly parking passes for sale at $71cad. this compares to the daily parking charge of $14.25cad. we performed a cross-sectional survey of parents with infants admitted in two level 3 nicus. survey results: of 51 families who completed the survey: • 38 (74.5%) used the hospital parkade regularly during their infant’s hospitalization. • 25 (65.8%) of those parents paid for parking by the month at some point. • at least one parent spent an average of 7.3 hours per day with their infant (range 2-24 hours). • the cost of parking affected the duration of time spent with their infant for at least one parent in 14 (34.1%) families. • the cost of parking affected the frequency of visits to the nicu for at least one parent in 12 (29.3%) families. participants stated obtaining monthly passes was complicated, given the unexpected and emergent obstetrical admission for some. they also described the parking office as difficult to find, located outside of the main hospital, and having restrictive hours of operation. in addition to this survey, free parking has been discussed in several other forums, leading to this topic being placed on our hospital’s operational plan and priority list of key issues. we have also partnered with the pediatric cardiology fact to form a joint working group to address this subject. conclusion we identified parking is a barrier to parental presence and active participation in care of their infant. a joint working group was created to carry this initiative forward. the joint working group will: • establish criteria for free parking and a consistent process for distribution of passes. • investigate sources of funding, including corporate and foundation sponsorship. • streamline the parking process and work towards an electronic parking system. • plan an audit to determine whether free parking increases parental participation in care and improves outcomes for infants and families. • plan an economic evaluation to determine whether free parking leads to overall cost savings to the health care system. free parking for parents of infants in the newborn intensive care unit (nicu): a collaborative approach with families j ryan yuen, catherine ward, kim tilley, laura hess, jag bhogal and juzer m tyebkhan stollery children’s hospital and royal alexandra hospital division of neonatology, department of pediatrics university of alberta, edmonton, ab, canada 18 • 2018 • developmental observer background preterm infants often require additional care and support after discharge and are at higher risk of neurodevelopmental disabilities.1-3 parents of preterm infants have a higher risk for short and long-term mental health issues (anxiety, depression, post-traumatic stress disorder) during newborn intensive care unit (nicu) stays and following discharge.1-3 these issues can negatively impact the parent-infant dynamic.1-4 the period immediately following nicu discharge is critical for parents as they navigate from the highly supportive nicu environment to an often-isolated home environment.1-3 objective • investigate parental perceptions of supports and services available following nicu discharge, including an exploration of how existing services could be improved and what community supports are perceived to be lacking. methods a qualitative descriptive research design with secondary analysis was employed using two study groups: 1) 13 participants (11 mothers and 2 fathers; 2 couples) with preterm infants born at less than 32 weeks gestational age and, 2) 14 participants (8 mothers and 6 fathers; 6 couples) with preterm infants born at 32-37weeks gestational age. at the time of the study, the infants were 3-12 months post-discharge. a combination of purposeful and convenience sampling was used. individuals participated in focus groups with a semi-structured question guide. thematic analysis of the data was conducted. (see figure 1) results two main themes were identified in the groups: parenting outside the norm & imagining supportive communities (figure 1). the themes spanned the continuum of parental experience from the nicu to home to community. parents perceived their experiences of loss, fear, separation and trauma made them vulnerable to mental illness. they, however, often did not see their health as a priority, particularly after discharge when their infant’s interests were consistently placed above their own. “…you tend to ignore yourself… i’ll deal with me later.” (parent 1, mother, fg 2). encouragement from nicu staff to seek out support was looked upon favorably. “it really feels like you can’t talk to anybody else, when you are in the nicu…” (parent 4, mother, fg1, gp1). participants identified peer and emotional support as a need in the nicu and community. parents reported self-imposed social isolation because of fears of illness and the lack of understanding of people who had not experienced preterm birth. “…when you come home you kind of start to process all those feelings and… the trauma of feeling like not knowing if your baby’s going to live, you know. and that’s… something that other moms don’t necessarily understand, that sort of trauma.” (parent 2, mother, fg 1, gp1). belonging to support groups helped parents by providing them with hope, encouragement and reassurance; by building their confidence, validating their concerns and providing concrete advice for specific questions. some found this “experiential knowledge” was “…more useful than [coming from] a health expert” (parent 3, mother, fg 1) to address “…specific mom-type questions” (parent 2, mother, fg 1). parents often perceived community services to lack expertise in preterm infants. “…he was 2.5 months old and i took him to public health for a support for parents of preterm infants post-nicu discharge jm toye1,2,6, x qiu3,4, t alvadj-korenic2,5, k long1, a reichert1,2 and k staub6 1 stollery children’s hospital, edmonton, alberta, canada 2 university of alberta, edmonton, alberta, canada 3 mount sinai hospital, toronto, ontario, canada 4 university of toronto, department of pediatrics, toronto, ontario, canada 5 women & children’s health research institute, canada 6 canadian premature babies foundation • design further studies to identify other barriers to parental participation in care of their infant and interventions to remove these barriers. references 1. jefferies al. kangaroo care for the preterm infant and family. paediatrics and child health. 2012; 17(3):141–143. 2. flacking r, lehtonen l, thomson g, axelin a, ahlqvist s, moran vh, ewald u, dykes f. closeness and separation in neonatal intensive care. acta paediatrica. 2012; 101(10):1032-1037. 3. ionio c, colombo c, brazzoduro v, mascheroni e, confalonieri e, castoldi f, lista g. mothers and fathers in nicu: the impact of preterm birth on parental distress. european journal of psychology. 2016; 12(4):604-621. 4. larsson c, wågström u, normann e, thernström blomqvist y. parents’ experiences of discharge readiness from a swedish neonatal intensive care unit. nursing open. 2017; 4(2):90-95. 5. smith k, buehler d, & als h. nursery assessment manual. 2008, rev 2011, boston, mass: nidcap federation international, inc. june 2011. http://nidcap.org/wp-content/uploads/2013/11/nnccs-manual-7jul11.pdf. 6. northrup tf, evans pw, lillie ml, tyson je. a free parking trial to increase visitation and improve extremely low birth weight infant outcomes. journal of perinatology. 2016; 36(12):11121115. statement of financial support j ryan yuen, catherine ward, kim tilley, laura hess, jag bhogal and juzer m tyebkhan have no financial relationships with commercial entities to disclose. developmental observer • 2018 • 19 weight and he was down a little bit. and they were like, maybe it was because of his umbilical cord. i was like, he is 2.5 months old – his umbilical cord fell off at 2 weeks old like read the chart! you know, it was frustrating. so i stopped taking him in altogether and got myself a scale at home … it was really frustrating to deal with people who didn’t get the preemie thing.” (parent 3, mother, fg3, gp1). lastly, some fathers perceived the nicu environment to be predominately maternal-oriented. conclusions the study findings provide insight into the support parents need following discharge. peer and emotional support were identified as particular areas of need. further studies that focus on strengthening existing community resources and integrating peer support are recommended. references 1. boykova m. transition from hospital to home in preterm infants and their families. the journal of perinatal & neonatal nursing. 2016; 30(3):270-272. 2. brecht cj, shaw rj, st john nh, horwitz sm. effectiveness of therapeutic and behavioral interventions for parents of low-birth-weight premature infants: a review. infant mental health journal. 2012; 33(6):651-665. 3. howe th, sheu cf, wang tn, hsu yw. parenting stress in families with very low birth weight preterm infants in early infancy. research in developmental disabilities. 2014; 35(7):1748-1756. 4. adama ea, bayes s, sundin d. parents' experiences of caring for preterm infants after discharge from neonatal intensive care unit: a meta-synthesis of the literature. journal of neonatal nursing. 2016; 22(1):27-51. acknowledgments we applied the sdc approach for the sequence of authors. we are grateful for the funding and mentorship of dr. shoo lee from mount sinai hospital and for the expertise and study promotion from the canadian premature babies foundation. we are thankful to the edmonton neonatal research group for assistance in recruitment and alberta health services for the facilities to conduct our research. this research was facilitated by the women and children’s health research institute through the generous support of the stollery children's hospital foundation. statement of financial support the authors have no financial relationships with commercial entities to disclose. figure 1. 20 • 2018 • developmental observer background all infants have important sleep needs, and those born prematurely have their own unique set of sleep habits and needs that are different from those of a full-term baby. sleep is essential for organizing and maturing the brain in premature infants; it also plays a role in maintaining the natural balance between different nervous system centers. dr. heidelise als' synactive theory and the nidcap model of care were presented at the 1st international nidcap workshop held in al-zahara hospital in isfahan, iran in october 2013. objective • assess the effect of a sleep care educational program on the nurses’ knowledge and practice in the newborn intensive care nursery (nicn). methods in this quasi experimental pre-post test study structured into three stages, 35 nurses working in a nicn in isfahan, iran, were included. the newborn sleep care educational program included oral presentation sessions with questions and answers followed by nurses’ exposure to sleep posters and booklets in the nicn. data was collected by a nurses’ knowledge questionnaire having shown validity and reliability through content validity and internal consistency respectively. the questionnaire consisted of 40 multiple choice questions asked prior to, immediately after, and one month after the education program was implemented. nurses’ practice was evaluated prior to and one month after the educational intervention using a 15 multiple choice questionnaire. data was analyzed by descriptive and inferential statistics using the spss16 software. results results revealed the mean score of nurses’ knowledge immediately and one month after the educational intervention was significantly increased as compared to prior to the intervention, 33.33(4.4) vs. 19.33 (4.1) (p < 0.001). the score of nurses’ practice was slightly improved following the educational intervention although it did not show any significant differences (p = 0.07, 42.6 (7.6) vs. 45.1 (7.8)). conclusions according to the results of this study, this method of education could lead to a significant increase in nurses’ knowledge; however it did not significantly improve their practice. this may be due to the low number of educational sessions; therefore, we recommended to nicn administration to invest in a long-term continuous educational program on premature infants’ sleep care to enhance nurses’ performance. lastly, this education may result in nurses’ support to create a quiet environment to promote good sleep in premature infants and improve their brain development, as well as to decrease infants’ developmental problems due to insufficient sleep in the noisy and crowded nicn with excessive handling and distracting procedures by staff. according to the american academy of pediatrics (aap), premature infants may sleep for as many as 22 hours a day, but only for about an hour at a time. also according to the nidcap model, states of consciousness (sleep & awake) are an important component in the nicn. nurses have an important role in creating a quiet environment in which premature infants have the greatest opportunity for good sleep and improved brain development. we recommend the nicn administration continues their efforts to improve nurses’ knowledge and practice by scheduling appropriate sleep care educational programs as long-term continuing education. references 1. hockenberry mj, wilson d, wong dl. wong’s essentials of pediatric nursing [book on cd rom]. 9th ed. usa: elsevier; 2011:493-4. 2. als h. newborn individualized developmental care and assessment program (nidcap): new frontier for neonatal and perinatal medicine. journal of neonatal-perinatal medicine. 2009; 2:135-47. 3. kenner c, mcgrath j. developmental care of newborns & infants [book on cd rom]. arizona: catherine albright jackson; 2004:43-50. 4. ludington hoe sm, johnson mw, morgan k, lewis t, gutman j, wilson pd, et al. neurophysiologic assessment of neonatal sleep organization: preliminary results of a randomized, controlled trial of skin contact with preterm infants. pediatrics. 2006;117:909-23. 5. allen ka. promoting and protecting infant sleep. advances in neonatal care. 2012;12:288-91. 6. duran r, ciftdemir na, ozbek uv, berberoglu u, durankus f, süt n, et al. the effects of noise reduction by earmuffs on the physiologic and behavioral responses in very low birth weight preterm infants. international journal of pediatric otorhinolaryngology. 2012;76:1490-3. 7. tarullo ar, balsam pd, fifer wp. sleep and infant learning. infant and child development. 2011;20:35-46. 8. verklan mt, walden m. core curriculum for neonatal intensive care nursing [book on cd rom]. 4th ed. usa: w.b. saunders, elsevier; 2010:210-4. 9. westrup b. newborn individualized developmental care and assessment program (nidcap) – family centered developmentally supportive care. early human development. 2007;83:443-9. 10. laudert s, liu wf, blackington s, perkins b, martin s, macmillan york e, et al. implementing potentially better practices to support the neurodevelopment of infants in the nicu. journal of perinatology. 2007;27 suppl 2:s75-93. the effect of a sleep care educational program on nurses’ knowledge and practice in newborn intensive care nursery (nicn) marzieh hasanpour1, fatemeh farashi 2, majid mohammadizadeh 3 and zahra abdeyazdan 4 1 nidcap professional, pediatric and newborn intensive care nursing department, school of nursing and midwifery, tehran university of medical sciences, tehran, iran 2 student research center, school of nursing and midwifery, isfahan university of medical sciences, isfahan, iran 3 department of neonatology, medical school, isfahan university of medical sciences, isfahan, iran 4 nursing and midwifery care research center, faculty of nursing and midwifery, isfahan university of medical sciences, isfahan, iran developmental observer • 2018 • 21 background the royal alexandra hospital (rah) is a tertiary perinatal center with an annual delivery rate of more than 7,000 births. the newborn intensive care unit (nicu) promotes familycentered care, minimizing parent-infant separation and promoting breastfeeding. preterm infants, however, often receive parenteral nutrition for extended periods of time and experience delayed initiation of oral feedings including breastfeeding. one of the reasons for this is staff reluctance to orally feed infants on non-invasive breathing support such as nasal continuous positive airway pressure (cpap) treatment. early initiation of oral feeding is associated with increased breastfeeding success, and oral feeding while on cpap has been safely applied in canada and internationally.1 currently the rah nicu does not have an oral feeding guideline. a retrospective chart review of infants less than 33 6/7 weeks gestation discharged from the rah nicu in 2014 indicated fewer than 10% were exclusively breastfed on discharge. only 50% of infants exclusively received breast milk, 25% were exclusively formula fed and 25% were fed a combination of breast milk and formula. objectives • implement an oral feeding guideline to promote positive oral experiences training (poetri) for infants receiving respiratory support and thereby increase breastfeeding rates at discharge. • decrease the age of preterm infants’ first nuzzle at the breast. • decrease the age of the first breast feeding for preterm infants. method the poetri team used the qi steps of plan, do, study, and act. we created, piloted, and revised a data collection and auditing form to identify baseline data, current gaps, and targets as well as track project progress and outcomes. baseline data were collected on 91 preterm infants born at less than 29 weeks to guide implementation of poetri. time to first nuzzle and first breastfeeding were identified as occurring much later than expected; these were identified as initial targets to achieve the longer-term goal of increased breast feeding rates at discharge. the feeding babies in sinc (safe, individualized nipplefeeding competence) algorithm was developed in calgary as a qi project over the last five years and is being adopted in several nicus in canada and the united states.1 our team collaborated with the team in calgary in reviewing and selecting the algorithm for piloting in edmonton. training workshops were held with poetri team members and 20 nicu clinical team members were identified as “poetri champions”. orientation poetri – positive oral experiences training: a quality improvement project to foster oral skill development in preterm infants matt hicks on behalf of the poetri steering committee, division of neonatology, department of pediatrics, university of alberta, alberta, canada 11. jan je, asante ko, conry jl, fast dk, bax mc, ipsiroglu os, et al. sleep health issues for children with fasd: clinical considerations. international journal of pediatrics. 2010;2010. pii: 639048. 12. calciolari g, montirosso r. the sleep protection in the preterm infants. journal of maternalfetal neonatal medicine. 2011;24 suppl 1:12-4. 13. miyazaki my, caliri mh, dos santos cb. knowledge on pressure ulcer prevention among nursing professionals. revista latino-americana enfermagem. 2010;18:1203-11. 14. mohammed sr, bayoumi mh, mahmoud fs. the effect of developmentally supportive care training program on nurses’ performance and behavioral responses of newborn infants. egypt: pediatric nursing faculty of nursing benha university; 2014. 15. ahmed ge, mohammad ha, assiri mh, ameri an. effect of instructional sessions on nurses’ and doctors’ knowledge and practice regarding developmental care in nicu in abha city. journal of education and practice. 2013;4:49-58. 16. goudarzi z, tefaq mr, monjamed z, memari a. impact on the knowledge and practice of neonatal special care for training nurses in pediatric units. journal of hayat. 2004;10:25 31. 17. ahmed ah. breastfeeding preterm infants: an educational program to support mothers of preterm infants in cairo, egypt. pediatric nursing. 2008;34:125-30, 138. 18. liaw jj, yang l, chang lh, chou hl, chao sc. improving neonatal caregiving through a developmentally supportive care training program. applied nursing research. 2009;22:86-93. 19. hadian shirazi z, kargar m, edraki m, ghaem h, pishva n. the effect of instructing the principles of endotracheal tube suctioning on knowledge and performance of nursing staff working in neonatal intensive care units. iranian journal of medical education. 2010;9(4):365-370. 20. day t, wainwright sp, wilson barnett j. an evaluation of a teaching intervention to improve the practice of endotracheal suctioning in intensive care units. journal of clinical nursing. 2001;10:682-96. 21. godarzi z, rahimi o, khalesi n, soleimani f, mohammadi n, shamshiri ar. the rate of developmental care delivery in neonatal intensive care unit. iran journal of critical care nursing. 2015;8:117-24. acknowledgments the authors wish to express their gratitude to all nurses of the nicn in al-zahara medical center in isfahan for their generous consent to take part in the study. they also express appreciation to the nursing and midwifery care research center and vice chancellery for research at isfahan university of medical sciences for funding the reported thesis and research project (no: 393760) and for their support of this study. statement of financial support the authors have no financial relationships with commercial entities to disclose. 22 • 2018 • developmental observer lunch and learn sessions were provided to bedside nurses to train staff in the poetri project and sinc algorithm. a pilot of the poetri program was then conducted for two months with 20 infants born at less than 29 weeks gestation. team members used the sinc algorithm to teach nurses and parents to recognize feeding engagement and disengagement cues. results there was a high degree of concern and discomfort with the idea of feeding infants on cpap and non-invasive respiratory support. it took much longer than anticipated to introduce the poetri project and concept of feeding on cpap to the bedside staff and increase their level of comfort to the point that the poetri project could proceed. collaboration with the team from calgary was crucial in increasing the comfort of staff members with the concept of poetri and sinc. the poetri project encouraged team-orientated decision making on progression through the sinc algorithm. infantdriven strategies and clearly outlined algorithms provide clarity and predictability related to care to all team members and parents and encourages communication. there can be a tendency to change the feeding method back to prior practice if infants are viewed as not progressing as quickly as desired. infants, who transitioned to the current unit standard of semi-demand feeding methology when they are not ready, had recurrent episodes of regurgitation and greater variability in volume intake as compared with infants who advanced more systematically through the sinc algorithm (see figure 1). key results of the poetri pilot: • the first feeding for 100% of the infants in the poetri group occurred at the breast versus 40% in the pre-poetri group. • first nuzzle at the breast occurred at an average earlier age of 786.3 hours in the poetri group as compared to 1454.2 hours in the pre-poetri group. this means mothers could put their babies to the breast to nuzzle four weeks earlier in the poetri group. • first oral feeding at the breast occurred at an average earlier age of 1118.4 hours in the poetri group as compared to 1477.0 hours in the pre-poetri group. this means mothers could have their babies feeding at the breast 15 days earlier in the poetri group. conclusions the poetri project supported parents to be more involved in the care of their babies and to engage in nuzzling at the breast a month earlier. for the mother of a baby born at 24 weeks, this is the difference between having the first opportunity to have her baby nuzzle at six weeks of age rather than ten weeks. there is a much higher rate of transfer from the rah nicu to intermediate care nicus than is commonly recog nized. projects aimed at attaining a specific outcome by discharge may need implemented across a region rather than at one site. in subsequent iterations of this qi project, the rate of breastfeeding at discharge will be ascertained once the algorithm is introduced to all nicus in the edmonton radius for transfers. references 1. dalgleish sr, kostecky ll & blachly n. eating in “sinc”: safe individualized nipplefeeding competence, a quality improvement project to explore infant-driven oral feeding for very premature infants requiring noninvasive respiratory support. neonatal network. 2016; 35(4):217-227. acknowledgements the author acknowledges the members of poetri group, w. rea, and n. lifeso. this work was supported by a grant from alberta health service’s quality improvement fund. statement of financial support matt hicks and the members of the poetri steering committee have no financial relationships with commercial entities to disclose. v o lu m e o f fe ed s (m ls ) corrected gestational age (weeks) individual consecutive feeds over time * direct breast feeding opportunities figure 1. typical pattern of feedings for an infant using the sinc algorithm and changed to semi-demand feedings at 38 weeks post-menstrual age (pma). developmental observer • 2018 • 23 about world prematurity day celebrated internationally on november 17th, world prematurity day (wpd) acknowledges the journeys of preterm infants and their families as well as raises awareness of the challenges faced by children born preterm and their families. purple is the symbolic color of wpd representing sensitivity and individuality, two of the characteristics of the premature infant. please join us in honor of world prematurity day 2018 the nidcap federation international (nfi) invites you to pay tribute to newborns, and to their families, nursery staff and hospitals around the world who provide essential nidcap care. it is not too early to begin planning for your wpd 2018 celebrations. a popular way to spread the word is through the purple illumination of landmarks in your communities and the purple illumination of hospital websites. the national nidcap training center in boston, massachusetts has arranged for the lighting of the zakim bridge which is traversed by tens of thousands of people every day, and the nfi hopes that each training center will arrange for a similar marking of the day whether it be the lighting of a bridge, a government building, your hospital’s website, your nicu’s webpage, or your community’s local newspaper (print or electronic version). please consider contacting the programs in your communities that can execute such “illuminations”. other suggestions for celebrating the day: • send the nfi’s wpd information sheet to your local news agencies to inspire a story about preterm birth; • sponsor activities for the parents of preemies in your newborn intensive care units and/or your communities; • coordinate an educational workshop for your nicu staff on the sensitivities and individuality of preterm infants; we encourage you to mark world prematurity day in your own special way. nfi celebrates world prematurity day november 17, 2018 sheraton porto hotel & spa rua tenente valadim, 146, 4100-476 porto, portugala annual nfi membership meeting sunday, october 21, 2018 1:30pm – 3:30pm sheraton porto hotel & spa rua tenente valadim, 146, 4100-476 porto, portugal hosted by the são joão nidcap training center, porto, portugal (by invitation only) the 29th annual nidcap trainers meeting october 20-23, 2018 http://nidcap.org/en/nfi-news/world-prematurity-day-2018/ 24 • 2018 • developmental observer developmental observer the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org 2018 vol. 11 no. 1 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international ““when i approach a child, [the child] inspires in me two sentiments – tenderness for what [the child] is and respect for what [the child] may become.” louis pasteur nicu baby love letters the nfi’s annual abstract issue in this issue, we publish the abstracts presented at our 28th annual nidcap trainers meeting in edmonton, canada, october 21-24, 2018. the peer review process led by nidcap trainer linda lacina, msn, rn, hn-bc selected abstracts for presentation based on their relevance, innovation, results, insightfulness and overall clarity and content. abstracts include: newborn intensive care nursery (nicn) initiatives (“baby love letters”, free parental parking, family mentor program, rounding with parents, and surgical nicu skin to skin care); education (foundational neurodevelopmental care program, positive oral experiences training, sleep care nursing educational program, nidcap mentored educational program); research (neurobehavioral profile preterm and full-term comparisons, maternal administration of the edin pain scale, and neurobehavioral disorganization); and beyond the nicn (newborn bridge clinic, developmental care, and parental support). this body of work reflects our members’ and their colleagues’ wealth of knowledge, scientific curiosity, experience and creativity. we are enriched by learning from one another as we continue to evolve our nidcap model and its implementation for future generations. the developmental observer’s editors welcome your comments and feedback. jessica bowen and jean powlesland university of illinois medical center at chicago, chicago, illinois background in supporting the relationship between parents and their baby, it’s important for providers in the newborn intensive care unit (nicu) to understand how parents view their baby. research shows a parent’s view of their child will impact how they interact and how they parent. many parents start to imagine and attach to their baby while the baby is still in the womb. this time is shortened for nicu parents, sometimes nearly in half. it is critical to understand how a nicu parent views their child, how they imagine who the baby already is and to help them create a rich and full understanding of their child’s strengths and challenges in the nicu and beyond. as we support nidcap, the university of illinois (ui) health nicu created baby love letters written from the voice of the newborn to help parents bond, understand and support their baby while in the nicu. objectives • help parents develop an understanding of their infant’s unique experience in the nicu. continued on page 2 table of contentsintroduction ............................................... 1 abstracts .................................................... 1 meetings and conferences .................... 18 nidcap on the web ................................ 20 abstract edition christyn davis reading a love letter from her daughter, cailynn nidcap federation international board of directors and staff 2017–2018 president deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net vice president james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary dorothy vittner, rn, phd senior nidcap trainer email: dorothy.vittner@uconn.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center email: n.conneman@erasmusmc.nl mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk gretchen lawhon, phd, rn, cbc, faan past president 2012-2016 nidcap master trainer email: premieg@gmail.com juzer tyebkhan, md nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca björn westrup, md, phd director, karolinska nidcap training & research center email: bjorn.westrup@karolinska.se rodd e. hedlund, med director nidcap nursery assessment and certification program nidcap trainer email: nnacpdirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu http://nidcap.org/en/nfi-news/developmental-observer-the-official-newsletter-of-the-nfi/ developmental observer • 2018 • 25 nidcap on the web to learn more about the nfi and its programs please visit us at www.nidcap.org please visit the nfi’s youtube channel to watch videos about nidcap (in 13 languages) and the nnacp. www.youtube.com/user/nidcapfi the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. follow us on all of our social media platforms: like us on facebook follow us on twitter follow our posts on pinterest connect with colleagues on linkedin watch our videos on you tube read and participate on our nidcap blog http://nidcap.org/blog/ https://www.facebook.com/nidcap https://twitter.com/nidcap https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international https://www.youtube.com/user/nidcapfi http://nidcap.org/blog/ http://nidcap.org/blog/ https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international www.nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center (inactive) university of oklahoma health sciences center oklahoma city, oklahoma, usa director: andrea willeitner, md west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: vandenbergka@yahoo.com carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy@uclh.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: hanne.aagaard@skejby.rm.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt nidcap germany, training center tübingen tübingen, tübingen, germany universitätsklinik für kinderund jugendmedizin director: christian poets, md phd contact: natalie broghammer, rn email: natalie.broghammer@med.uni-tuebingen.de french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr australasian nidcap training centre westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, rn, mn contact: nadine griffiths email: schn-nidcapaustralia@health.nsw.gov.au edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: trina cruz email: nidcapedmonton@ahs.ca http://nidcap.org/en/about-us/membership-overview/ 24 • 2020 • developmental observer the department of neonatology at tübingen university hospital has the capacity of 51 beds, 17 for each level of newborn care. german neonatology, similar to that in the us, is rather decentralized, so that our department, although admitting 120-130 infants <1500 g (vlbw)/year, is among the 6 largest in the country. four years ago, binding regulations on staffing were introduced in germany, so that vlbw infants now receive 1:1 or at least 1:2 nursing care (depending on illness severity), which has been very helpful for nidcap work and implementation. our heritage-listed hospital (built in 1931) is the first ever built in the famous “bauhaus style*”, but this also means that no changes could be made to its outer structure. infants admitted to our department are therefore cared for in bedrooms with 2-5 cots/room with quite limited space, which often represents a big challenge for staff and parents. on an academic level, tübingen holds one of only 3 academic chairs in neonatology in germany, meaning that it is comparatively free in deciding on its budget and workforce allocations. for introducing nidcap, this certainly helped in assigning parts of this budget to fund our goal of becoming a nidcap training center. we are convinced that individualized newborn care, focused on the infant’s development and integration of its family, is crucial in achieving a good outcome for both the baby and his/her family. thus, we are grateful that heidelise als, our nidcap master trainer, helped us pave the way to becoming the first german-speaking nidcap training center, which we opened on world prematurity day 2015. by now we have 2 certified trainers heading a multidisciplinary team of 8 nidcap professionals, including nurses, physicians, speechand physiotherapists, who all have a certain number of hours per month available to do nidcap observations and to provide guidance for the families and the team. through our work with heidelise als we learned to value individual observation sessions, which we carry out every 1-2 weeks in all infants born at <28 week gestation. these observations form the basis for our focus on the experiences and histories of each individual infant and its family. in a stepwise fashion, we recognize nidcap training centers around the world nidcap training center tübingen, germany nidcapteam tübingen (2015) from left to right kerstin gründler (md, nidcap-professional), tabea tjhen (speach therapist, nidcap professional), birgit holzhüter (md, nidcap-trainer), natalie wetzel (rn, nidcap-trainer), rebekka bauer (rn, nidcap professional), prof. heidelise als (nidcap master trainer), ina schmollinger (rn, nidcap professional), eva jochim (rn, nidcap professional), susi wagner (rn, nidcap professional) © n at al ie w et ze l doi: 10.14434/do.v13i1.29093 developmental observer • 2020 • 25 each baby‘s strengths and vulnerabilities as well as his/her current developmental goals and support him/her in the next steps. the knowledge gained from these observations, including the current goals of the infant, are always reported back to parents and staff in written form in addition to being reported during weekly rounds with our head of department. by observing the infants we became aware early on that implementing nidcap and sharpening our view on the needs of the preterm infants and their families would be associated with a variety of changes to our daily work. we therefore established a nidcap steering committee, comprising medical management as well as front line nursing staff and nidcap professionals and trainers, to introduce sustainably and effectively the necessary measures for an individualized, developmentally supportive and family integrated philosophy of care. it has always been our concern to integrate the staff of our units into the ongoing process to benefit from their creativity and knowledge. throughout the last 10 years our staff, in cooperation with the nidcap team, developed for example new incubator blankets and an innovative positioning aid to assure a comfortable environment for the infant. moreover, regular training and reflection sessions made it possible that the routines on the ward became more flexible. amongst other things, we individualized the time for “kangaroo care” or adjusted routines like blood taking or ultrasound scans to the rhythm of the baby whenever possible. feeding issues, particularly breastfeeding, have received our attention for many years now. in 2015, a multi-disciplinary working group developed a feeding guideline, adapted to the requirements of our department. the aim of this guideline is to support an early breastfeeding relationship with the baby and positive feeding experiences, either at the breast, bottle or via a feeding tube. last year we established additional weekly feeding rounds that are supported by our breastfeeding consultants. we now increasingly focus on aspects of care related to the integration of the family. in the course of this, we started earlier this year with parents attending our ward rounds once a week. in these particular rounds the parents, not the professionals, report on their baby’s present situation as well as his or her next steps. our goal is to acknowledge the parental competence and experience of parents as the primary caregivers of their baby to complement our professional view and thus actively involve them in all decision-making and care-planning. we are convinced that this strongly affects parental self-confidence and strengthens the role of the parents within the unit. in 2021, we expect to open an additional unit in a new building adjacent to the current nicu that is based on the swedish karolinska model, where parents can live in apartments that are only separated by a thin wall from their baby receiving intensive care. the babies’ care space is designed as a single room. we hope that a more intimate environment accompanied by the proximity between baby and parents and provision of care that is reliably based on nidcap principles will contribute to the healthy development of our little patients and their families. members of our very active parents’ association are involved in the planning of this new unit. they help us to understand the situation and the needs of parents better and support us with regular feedback and ideas for improvement. all in all, our progress in the last 10 years wasn´t always easy and there were multiple setbacks, but from today´s point of view each step, even the smallest one, was and will be a step in the right direction, a step to improve the future of preterm infants and their families. thus, we simply keep on moving forward. susi wagner observing an infant to learn about the strengths, vulnerabilities and current goals of the infant *the bauhaus style was marked by the absence of ornamentation and by harmony between the function of a building and its design. © u ni ve rs itä ts kl in ik um t üb in ge n © n eo na to lo gi e tü bi ng en 14 • 2019 • developmental observer of all the advances in neonatology in the past several decades, developmentally supportive, family-centered care is arguably one of the most powerful tools for improving outcomes in countries with limited economic resources. developmental care does not require expensive technology, and rather it is based on sensitive observation, responsive hands-on care, and strengthening relationships among infants, families and caregivers. while some aspects of the highest quality, newborn individualized developmental care and assessment program (nidcap) based developmental care can be relatively costly (for example, single-room nicu design including family accommodations), resourceful and adaptive planners in developing countries are no strangers to finding creative solutions to such challenges. we have only to look at the history of kangaroo care to see strong proof of this concept, as countries as diverse as colombia, south africa and argentina have led the way in developing and implementing this critical strategy. a collaboration opportunity these issues were clearly demonstrated in a recent educational effort that this trainer was fortunate to participate in during a visit to the beautiful country of belize in the fall of 2017. belize is a fairly small independent and sovereign country located on the north-eastern coast of central america bordered on the northwest by mexico, on the east by the caribbean sea, and on the south and west by guatemala. belize is about 180 miles long and 68 miles wide on the mainland, with a population of around 370,000 people, a relatively low density. it is geographically impressive, with famous coral reefs, rain forests, and mountainous areas. the population is extremely diverse culturally, ethnically and linguistically. though the official language is english (independence from great britain was obtained in 1981), over half the population is multi-lingual, with creole and spanish spoken by many. the health care system is a complex combination of advances and limitations, with an active health ministry working hard to improve outcomes, but limited numbers of locally trained professionals available to serve the geographically dispersed population. one of the strategies currently in use is close collaboration with high-quality nonprofit agencies to provide not only direct care, but also training and professional development. the non-profit agency world pediatric project (wpp), based in the united states (richmond, virginia and st. louis, mis souri) has been a leader in this work, by coordinating visits from leading pediatric specialists from the u.s. who work closely with professionals in belize to help children with complex medical and surgical needs. wpp works with physicians and families to bring children who require specialized care to u.s. facilities (arranging visas, transportation and financial support for parents as well as children). of equal importance in wpp’s work is the facilitation of professional visits that provide intensive, person-to-person training on issues requested by the local medical staff. the physicians, nurses, and other specialists donate their time and expertise, with wpp providing logistical support and maintaining ongoing relationships with the facilities and professionals involved. (note: wpp operates in twelve countries in central america and the caribbean.) newborn care in belize one important activity for wpp in the past several years is enhancing newborn care in belize, which has one newborn intensive care unit for the entire country, located at karl heusner memorial hospital in belize city. local leaders have drawn on multiple resources, including support from such varied donors as the government of japan, to allow the construction of an immaculate and fairly spacious new facility that includes not only impressive technology but also parent sleep rooms and a roomy family lounge. additionally, the hospital has achieved babyfriendly designation and is strongly committed to breastfeeding for all infants. however, the staff of the nicu, including administrative leaders, nursing leaders, and physician leadership including belizian and cuban physicians, strongly desired to continue to improve the quality of care. they were able, with the help of wpp, to link with a number of u.s. specialists, in fields just as pediatric surgery and urology. volunteer physicians include north carolina-based neonatologist dr. claudia cadet, who has training and experience in international health. dr. cadet began her work in belize focusing on improvement in respiratory care. as she planned a return visit in close conversation with the professionals in belize, she was asked to include developmental care in the materials to be shared during her next visit. in response to this request, she included this trainer on her team, which also included an experienced nurse practitioner and a nurse educator who is actively pursuing nidcap professional status. the team was very clear that the goal of the visit was to support and strengthen the efforts begun by the local professionals, who had made a great start but wanted to continue to progress, with formal training programs belonging in the future. the visit by the team of four (all current or recently part of wakemed’s nicu) was a wonderful experience due to several key factors. a primary factor was the relationship that dr. cadet global perspectives of developmental care – belize melissa r. johnson, phd senior trainer, carolina nidcap training center, raleigh, nc, usa developmental observer • 2019 • 15 had built with the staff of wpp and the local medical team, who were able to discuss in detail what their needs were prior to the team’s visit. another factor was the caliber of the wpp staff in belize, whose understanding of the local health care system, the hospital’s history and structure, and the cultural issues impacting care, were all critical. the nursing leadership in the unit was paramount to success, with the head nurse demonstrating the qualities of leadership of her staff, dedication to quality, and motivation to strengthen developmental care that would be the envy of any nursery. it was especially striking when several supervisors, including the nurse manager, took over the care of all the infants for an hour so that the entire afternoon shift could attend a developmental care lecture. an additional key component, as is so often the case, was flexibility. for example, topics needed to be shortened or expanded depending on issues noted at the bedside (i.e. more time on issues of nutrition and a last-minute addition of a talk on developmental follow-up), and many key concepts were so much better communicated through demonstration than lecture (i.e. four-handed care). finally, we quickly discovered that the word “can’t” was not in the vocabulary of these professionals; some of the recommendations that we made fairly tentatively, not sure if they would be possible, started to be implemented before the end of the first week (i.e. dimmers on light switches). lessons learned what were some of the key lessons learned during this visit that might be useful to other nidcap professionals with an interest in sharing this work in countries not yet included? • begin by building on existing strengths, where nurseries have the creativity and motivation to push forward even with the existence of real challenges. • as always, relationships are critical, and time spent discussing local priorities and interests is perhaps even more important than when you are training in your own culture. • flexibility is everything; think of your original itinerary and curriculum as gentle suggestions to get you started, with the real schedule emerging based on what is happening that week or that day. • never assume that something is impossible; professionals in developing countries have resilience and adaptive skills, from which we have much to learn. • identify an existing organization that has experience and expertise in facilitating health care improvement in the region in which you will be working. • take advantage of the “low tech high touch” aspects of our work, such as skin-to-skin and four-handed care, as you help build confidence and capacity. in thinking about these lessons, it also appears that some of them apply to work in the trainer’s own cultural context. developing and building relationships, starting with strengths, and adapting to the unique needs of each nursery and community are important in all training and consultation activities. as the work of the nidcap federation international continues to expand throughout the world, sharing our knowledge with countries who have fewer financial resources will pay us dividends as we gain from their resources of energy, commitment and creativity. the wakemed neonatology team and belize leadership local headquarters for the sponsoring organization, world pediatric project the nursing leadership in the unit was paramount to success, with the head nurse demonstrating the qualities of leadership of her staff, dedication to quality, and motivation to strengthen developmental care that would be the envy of any nursery. 8 • 2020 • developmental observer objective our objective was to determine the impact of an early discharge with home care tube feeding program (edhc) – regular discharge on two-years corrected-age (ca) neurodevelopmental outcomes for preterm infants born between 25 and 35 gestational age (ga). secondary outcome measures were length of hospitalization stay, breastfeeding and first year hospital readmissions. methods this observational study compared 415 edhc preterm infants from toulouse university hospital, born between 2008 and 2015, and 3186 preterm infants of the epipage 2 study cohort born in all french newborn units in 2011. neurodevelopmental ages and stages questionnaire (asq) was used to assess neurodevelopmental outcomes. length of hospital stay, breastfeeding rates at discharge and six-months and hospital readmission rates during the first year were compared between the two groups. differences in the two populations characteristics were adjusted with multivariate multilevel regression analyses. results at two-years ca data on asq were available for 125 edhc and 2066 epipage 2 preterm children. edhc preterm singletons had 61% less risk to obtain a total asq score below threshold of 220 (or = 0.39 [0.32-0.48], p < 0.001), less risk to have communication abilities above threshold (or=0.42 [0.340.53] p<0.0001), fine motor skills above threshold (or=0.63 [0.51-0.78] p<0.0001), problem solving abilities above threshold (0r=0.53 [0.43-0.66] p<0.0001), and personal-social skills above threshold (or=0.64 [0.52-0.78] p<0.0001). length of hospital stay was nine days shorter for the edhc preterm infants (p<0,0001). edhc preterm children were more likely to be breastfed at final discharge (or = 3.59 [2.82-4.58], p < 0.001 for singletons and or = 2.25 [1.62-3.14], p < 0.001 for multiples), and breastfeeding was more likely to be continued over six months among those same children (or = 1.76 [1.34-2.32], p < 0.001 for singletons, or = 3.64 [2.10-6.32], p < 0.001 for multiples). finally, edhc children singletons had less risk to be readmitted in hospital during the first year (or = 0.65 [0.55 to 0.77], p < 0.001). conclusion the early discharge with home care program seems to improve neurodevelopmental outcome at two years of age, length of hospital stay and breastfeeding among preterm infants. it seems also to protect from hospital readmission during the first year. home care should be promoted in newborn intensive care policies. early discharge with home care tube feeding program benefits on two years corrected age neurodevelopmental outcomes, breastfeeding and first year hospital readmissions for premature infants losbar j1, arnaud c2, glorious i1, lescure s1, casper c1, montjaux n1 1 nicu, children's hospital, toulouse university hospital, france 2 umr 1017, inserm, toulouse university hospital france the who has designated 2020 the international year of the nurse and the midwife. nurses and midwives play a vital role in providing health and caring for mothers and babies . we would like to hear your stories and how nidcap has enhanced the role of nurses and midwives. doi: 10.14434/do.v13i1.29083 2022 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 papa i, montesi a, grandi s, mandolesi r*, simeone n, ancora g nicu ausl romagna, ospedale infermi, rimini, italy *trainee at the bologna school of cognitive psycotherapy background preterm infants require individualized care and family support after nicu discharge, both to close the gap from discharge to first follow-up appointment, and to support neurodevelopment throughout the first 1000 days from conception. efcni’s standards of care emphasize the need of a multidisciplinary follow-up (fu) program for premature infants after nicu discharge. a fundamental component of good nurturing care is supporting parents to be co-regulators in their child’s neurodevelopment. parents of premature infants are at high risk of shortand long-term mental health difficulties, partly due to an abrupt change in the caregiving environment after discharge from a highly supportive environment in the nicu to a relatively isolated home environment especially during the covid-19 pandemic. aim to describe a new modality used in our preterm infants fu program, which incorporates nidcap-based principles of care. methods since 2015, our fu program has been reorganized as follows: application of the nidcap approach, combined with structured neurobehavioral evaluations (which includes naturalistic observations of parent-infant interaction and the hammersmith infant neurological examination (hine)) and a nidcap observation report for the family in which the infant’s strengths, achievement of neurodevelopmental milestones, future challenges, and key recommendations are emphasized. this reorganization was possible because the fu team included nidcap professionals and trainees. the fu evaluation also includes two psychologists to support the families and to administer psychometric tests to infants. the fu is scheduled at 3, 6, 12, 24 and 36 months of corrected age (ca). bayley scale of infant development iii ed. (bsid) is administered at 12, 24 and 36 months ca. results since 2015, 173 elbw-vlbw attended the fu program. prevalence of cerebral palsy was 5.2%, according to gross motor function scale (9/173), lower than previously reported for a comparable population in literature (10-15%). bsid data were collected from 171, 127, and 80 infants at 12, 26 and 36 months ca, respectively. poorer outcomes were correlated with lower gestational ages (ga). cognitive scores <= 75 were detected in about 5% of cases (9/171 at 12 months ca, 6/127 at 24 months ca, 4/80 at 36 months ca). single infant’s neurodevelopmental trajectories showed an improvement of bsid motor scores through the years even at lower gas. however, up to 25% of infants showed low performance scores at 24 and 36 months ca in the expressive domain of bsid language scale. during the same period, our nicu transitioned from standard care to nidcap-based care and a nidcap training centre opened in 2020. relevance to nidcap developmental care is to be continued long after nicu discharge, in order to support parents in providing appropriate developmental experiences to their infants. a nidcap trained team in the fu program afforded the continuation of individualized family centered care for parents and infants long after discharge. conclusion improvement in single infants neurodevelopmental motor trajectories, low prevalence of poor cognitive outcome and cerebral palsy (cp) were observed during a fu that included the principles of the nidcap care for infants and families also after discharge from nicu. to enhance individualization and multidisciplinary support in the follow-up program, future steps in our unit will be the introduction of videotaped naturalistic observations, apib assessments and measurement of parents’ perceived experience. investigation of the role of the application of the nidcap approach during the follow-up period deserves future studies. nicu “graduates” follow-up: goals achieved and future perspectives of a nidcap team doi: 10.14434/do.v15i1.33778 “we are challenged to integrate research findings into nidcap work.” nidcap trainers meeting feedback 2 • 2020 • developmental observer 2020 is continually described as unprecedented (our world has never faced this scale of international pandemic before) and as creating a new normal (life is very quickly changing as we adapt around the world). everything appears to be affected. this most certainly includes access to and the experience of hospitalizations and healthcare. within newborn and infant intensive and special care nurseries, parents are being separated from their newborns and young infants because of hospital infection precautions. healthcare professionals are tasked with providing medical care in the face of tremendous barriers, workloads and sacrifices. how do healthcare professionals, and the families they serve, understand and navigate all of this extraordinary adversity? one key to these understandings may be hearing and reflecting on the stories, the struggles and the triumphs, of everyone who is part of these systems of care. brené brown, phd, lmsw, a research professor, wrote “maybe stories are just data with a soul.” families’ and professionals’ lived experiences, including ones of pain and suffering, may provide insight, inspiration and direction for healthcare’s next steps. much has been written on how hardship impacts individuals. for instance, kaufman and gregoire (2015) stated that “experiences of extreme adversity show us our own strength.” (p.146) beyond survival, these authors optimistically described how individuals may also thrive with adversity. this capacity for resilience is a profound strength that offers stability and growth for individuals as well as for healthcare systems. this unprecedented year is also creating challenges and a new normal for the nfi and nidcap efforts. nidcap training centers and their trainers are faced with how to educate and guide trainees and hospitals with in-person and travel restrictions. this comes at a time when individual and system-wide support is needed more than ever. how will the nfi navigate the short and long-term challenges ahead? to thrive as an organization in this rapidly changing world, the nfi must respond to the incredible realities faced by nidcap trainers around the world. examining difficulties, strengths and opportunities are crucial at this time. drawing on the remarkable skill, passion and experience within our community, we must listen, question, discuss, reflect, learn and create with one another. innovations for training, education and support may emerge as the nfi’s members, its nidcap trainers and supporters, continue to share their own experiences and perspectives with one another. our global nfi community offers tremendous strength and wisdom to draw upon for stability and direction. support for and from one another may lead to inspiration of creative possibilities to build future directions. the nfi, and its members, have a tremendous opportunity to rise up to meet this extremely difficult moment in time. how 2020 captures our collective hearts and imaginations and informs our next steps will ensure that the nfi and nidcap’s capacities and reach thrive for years to come for newborns and infants and their families. reference: kaufman, s. b. & gregoire, c. (2015). wired to create: unraveling the mysteries of the creative mind. new york, ny: perigee books. welcome to the second issue for 2020. what a year it has been so far. there have been many challenges for the nidcap community. resilience is a prime focus at the moment. this issue has a theme of reflection from our global community. there are a variety of interesting perspectives. michiko doi reflects on her journey as a nidcap translator in japan, giving us a unique glimpse into her world. bronagh mcalinden from australia reflects on her observations of two newborn feeding episodes showing the importance of close observation. ita litmanovitz joins us from the science desk reflecting on the effects of covid-19 through her examination of stress on the developing brain, and in our new poet’s corner, julia giesen, nidcap professional, reflects on her nidcap training through her poetry. in our family voices column we hear a father's journey through the nicu with his twin daughters. these manuscripts show the power of reflection, not only as a learning strategy but as a way of enriching the experience of the journey. we journey to barcelona, spain to hear about the work of the nidcap training centers and we travel to cyprus in the mediterranean to learn about developmental care initiatives. the rimini team share their beautiful story of their using beauty to minimise stress in the nicu. deborah buehler, president of nfi shares her essay on what she sees as the strength of the nfi collective during these challenging times. the global spread of nidcap is evident with contributions from japan, australia, canada, israel, italy, spain, cyprus and usa. we are certainly a global community. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia doi: 10.14434/dov13i2.31064 kaye spence, am greetings from the editor 2023 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aim nidcap neurobehavioural observations are conducted routinely in our nicu, and recently have been augmented with video. this project evaluated the quality of sleep of infants in our level 3 nicu, as part of ongoing education and quality improvement. methods a convenience sample of preterm infants were recruited for nidcap observations with video. parents provided informed consent. infants were observed in their beds and/or while held. these observations occurred while the infants slept, and other interventions were minimal. behavioural states were assigned during observation according to the nidcap manual for naturalistic observation of newborn behavior.1 the number and frequency of state changes, the longest epoch of state and its duration, total time in each state, and length of sleep-wake cycle were calculated. a sleep-wake cycle was defined as a period of sustained deep sleep (ds) followed by spontaneous arousal to quiet awake.2 parents, nurses, and neonatologists were asked to estimate the length of infants’ sleep wake cycles. results/findings nineteen infants were observed for a total of 38 observations. infants were observed in their bedspace in the nicu at various times of the day. no attempt was made to modify the environment or to replicate the environment when an infant was observed more than once (13 infants). twenty-four observations occurred while the infant was in a crib and 14 while held. twelve of these 14 held episodes were skin-to-skin with a parent. data are presented for 17 observations; further analysis is ongoing. • the mean length of time between state transitions was 2 minutes 39 seconds (range 1’12’’ to 10’15’’). • the longest epoch of any one state during any one observation was a mean of 12 minutes 42 seconds (range 3’ to 33’). most of these epochs were of light sleep, state 2a. • ds was observed during 9 of these 17 observations. the infant was being held during 7; the percentage of time in ds while held ranged from 6.6% to 80.5%. for the two observations of infants in the crib, the percentage of time in ds sleep ranged from 5.1% to 17.5%. • of the eight observations for which no ds was observed, the infant was always in the crib. • five infants were observed both in the crib and while being held. all five achieved more ds when held (up to 80.5% of the time) compared to the crib (maximum 5.1% of the time). • parents, neonatologists, and nurses were unsure of the length of sleep-wake cycle. when asked to estimate, responses varied between 20 minutes and 3 hours. • very few infants achieved a sleep-wake cycle, as defined above. limitations polysomnographic identification of sleep-wake states was not possible. this could have improved the accuracy of the assignment of behavioural state. only five of 19 infants were observed in both conditions (held and in crib), which may limit the validity of the comparison between “sleep while held” and “sleep in crib”. the physical environment of each infant’s bedspace was not standardized, which may have impacted the quality of sleep. relevance to nidcap the nidcap naturalistic observation is a clinically useful tool to assess the quality of sleep in the nicu. observation of sleep states and sleep wake cycles may be one method of assessing improvements in the quality of neurodevelopmental care in the nicu. conclusion preterm infants in our nicu had suboptimal organization of sleep, with frequent transitions of state, little if any deep sleep, and poorly defined sleep-wake cycles. infants achieved more deep sleep when held than in their crib. our results demonstrate the critical developmental impact of prolonged close contact with parents and will guide practice change. references: 1. als h. manual for the naturalistic observation of newborn behavior. copyright nidcap federation international, 2006, 2015. 2. graven sn, browne jv. sleep and brain development. newborn and infant nursing reviews. 2008;8(4):173–9. quality of sleep in a level 3 nicu chabba r1,2,4, tyebkhan j1,3,4 1stollery children’s hospital, division of neonatology, 2university of alberta, department of medicine, 3university of alberta, department of pediatrics , 4edmonton nidcap training centre canada (entcc), edmonton, ab, canada doi:10.14434/do.v16i1.35766 developmental observer • 2020 • 5 fa m i ly v o i c e s column editor: debra paul, otr/l doi:10.14434/do.v13i2.31065 our story began early on the morning of july 18th, 2019 when i was awoken by a startling scream. my wife nikki had woken up in the middle of the night to discover she was bleeding, a lot. nikki was just four days into her 27th week of pregnancy with our twin girls. in a haze of sheer panic, nikki waited in the car crying as we called our next-door neighbor to stay with ben and lily (our older set of twins) until nikki’s dad could drive from his home two hours away to stay with them. with our eldest in our neighbor’s care, we rushed to abington hospital – jefferson health in abington, pennsylvania. nikki was immediately placed in the triage portion of the maternity ward. we felt as if our worst nightmare was coming true again, as another frantic visit 11 months ago ended in the tragic loss of our daughter sophie at term when it was discovered that there were knots in her umbilical cord that had suddenly tightened. thankfully, after what seemed like an eternity, the medical team were able to find heartbeats for both babies, and so far, they were doing fine. the focus now turned to nikki to try and ascertain the reason for the sudden heavy bleeding. in past ultrasounds, it was identified that nikki had a very marginal placenta previa. although the doctors had originally told us this would likely rectify itself in the next few weeks as the babies grew, without another known cause, they believed this was the likely reason. while the doctor prepared us for an emergency caesarian to deliver the girls, time passed, and after an hour or so the bleeding slowed down and panic was averted for the interim. after a few hours in triage, nikki was transferred to the maternity ward for additional monitoring where the conversation turned from an emergency delivery to the possibility of moving nikki to a “mom unit” for the remainder of her pregnancy. that evening i drove the 10 minutes back to our house to check on the kids (and nikki’s dad). after speaking with nikki and preparing for my return to the hospital early the next morning, i received a frantic call from nikki telling me she started bleeding again and that i needed to get to the hospital as soon as possible for delivery of our girls. as i walked into the maternity ward, i saw the obstetrician (ob/gyn) outside nikki’s room; she was the same ob/gyn that delivered our eldest twins, and i took much comfort in that as we both knew her very well. nikki’s doctor told me outside her room that we had to move ahead and deliver the babies for nikki’s safety given the volume of blood she was losing. i recall tearing up and thinking to myself that i couldn’t let nikki see me crying as i had to be strong for her since i knew she was very scared. after taking a minute to compose myself, i walked into her room, held her hand, and the adventure began. we were whisked off to an operating room and before i knew it, lucile ‘lucy’ sophie and matylda ‘maty’ maura had entered the world topping the scales at a whopping 2 pounds, 6 ounces (1179 grams) and 2 pounds, 3 ounces (1043 grams). each baby had their own team working with them and i got a brief second to see each baby (and cut lucy’s umbilical cord!) before they disappeared to the nicu. i was genuinely surprised by how big they looked, or maybe long is a better description given how skinny they both appeared. in my head a 27 weeker was going to be tiny, and in the grand scheme of things they certainly were, but it was a small comfort to see that they resembled a fullterm baby much more than i expected. after staying with nikki as she moved through recovery and was transferred to her hospital room, i set off to the nicu to get an in-person update on lucy and maty. the nicu was already familiar to us, as our other set of twins, ben and lily were born a father’s journey by kevin o’regan proud dad with maty and lucy at 33 weeks pma. 6 • 2020 • developmental observer at 35 weeks, 6 days in the same hospital where they spent 5 days in the nicu. their time in the nicu, however, was not due to prematurity. ben had a broken humerus from a traumatic delivery, and lily had low glucose levels. thinking back on our first experience with the nicu as worried first-time parents, those 5 short days felt like a lifetime. little did we know the months of nicu life that were to come. when i arrived maty and lucy were in their incubators surrounded by medical equipment with all kinds of tubes and wires connected to them. they were stable, and according to their nurses, doing as well as could be expected. the array of equipment and sounding alarms everywhere was overwhelming as a parent you want to protect your children from harm, and that day, i felt absolutely helpless. for the first few days we could only touch them through the walls of the incubator, holding their tiny hands as their little chests rose and fell with each cpap assisted breath. finally, after two days, they were stable enough to be held. i still remember the image of nikki holding them for the first time. after a troubling year for our family, she had never looked so happy. at first our time in the nicu moved slowly with what seemed like little progress from day to day. in my limited experience of illness or hospitalizations, there are usually typically signs of change that either signal improvement or regression. in my nicu naivety, i was expecting a similar sign with the girls in those first few days or at least some indication that they were going to be ok. obviously, no one can predict the future, but i longed for a crystal ball for a peek of what was to come, some indication that the long road ahead was going to ultimately end with all of us going home together, happy and healthy. both my wife and i have an extensive science background, so we questioned everything, wanting to understand the how and the why behind each and every decision and change in their care. we always made sure to be present for daily rounds so we could be part of the conversation and advocate for the girls. personally, i became focused on the numbers on the monitors. their heart rate, respiration rate, oxygen saturation those were the numbers i lived by for three months. initially every alarm was terrifying, who wasn’t breathing, what were their vital signs?... was their oxygen saturation level dipping?... was i holding the girls incorrectly? over time i came to understand that each alarm wasn’t a cause for panic, just a signal to assess the situation and address any issues accordingly. being a small part of maty and lucy’s daily care made a huge difference. i looked forward to just doing things like changing a diaper or taking their temperature; these small things in the crazy situation made me feel more like a normal parent in a far from normal situation. the highlight of course was holding them, feeling them breathe against your chest they felt so small, so fragile, yet so incredibly strong and resilient. of course, the nicu experience is full of ups and downs. you hope for consistent steady progress, reduced breathing support, gradual weight gain and positive test results. each battle that the girls won came with new challenges for them navigate; it truly is a rollercoaster. it was important to try and stay positive, but at the same time to temper your optimism and try to maintain an even keel so you could enjoy the progress without getting too down about the setbacks. bringing the girls home. developmental observer • 2020 • 7 our nicu had a tradition of printing out signs to celebrate various milestones – a pound gained, a bottle finished, and so on. as a parent, as simple as it seems, you wanted to see those signs next to your child’s incubator so badly. given the layout of the nicu, we could see other babies ahead of ours in their journey. although the plethora of signs at their stations were always a source of jealousy, they also gave us hope that our girls would someday soon reach these seemingly small but important milestones. slowly we began to chat with some of the other nicu parents. the more familiar a face, the less awkward we felt saying hi or chatting to them briefly without disturbing their privacy. those conversations helped. it’s a unique experience and chatting to someone going through the same gamut of emotions was a welcome distraction. in the initial weeks of our journey nikki spent the day with the girls and i would go in for a few hours each evening after work to sit with them and hold them. leaving them at the end of each visit was always difficult, hoping for an uneventful, alarm-free evening; yet our girls were never alone, and in many ways, neither were we. the entire nicu staff including the receptionists, the respiratory therapists, the doctors, and most importantly, the nurses who doted on them every day all became part of our family. loving our children with us and for us, sending us pictures and updates in the middle of the night, talking to us about nothing and everything. they were fantastic and will hold a special place in our hearts forever. as the girls progressed, we were able to play a bigger and bigger role in their care, feeding them bottles, changing their clothes, and my personal favorite – bath night. despite the obvious physical improvements that the girls were making (weight gain, transitioning to a bottle, and breathing without assistance), our minds always turned to their development. fortunately, our nicu had a developmental specialist on staff. she had spent some time with the girls throughout their stay, initially monitoring how they reacted to their care and feedings, but it was when she administered the assessment of preterm infants' behavior (apib) test that i was really intrigued. the idea of the test initially seemed a little bizarre as i couldn’t see how a preterm baby could possibly do any of the things being assessed. yet, to my genuine surprise, each test elicited the predicted response, and it was immensely comforting to see that the girls were behaving as they should from a developmental standpoint. after 75 days, the girls were finally given the green light to go home. looking back on our experience in the nicu, we were incredibly fortunate for a relatively smooth journey and will always be indebted to the wonderful, caring staff we met and befriended. with their help, our girls have already overcome the greatest challenge of their lives and are now thriving one-year olds. each day brings to light new facets of their personalities, and i can’t wait to see who they become in the years ahead. kevin and nikki live with their family and a very lazy basset hound in hatboro, pennsylvania. maty and lucy – one-year birthday (9 months adjusted). 2022 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 yakobson d 1,2, elefant c3, litmanovitz i 1,4, bauers s 1,4, arnon s 1,4 1 neonatal department, meir medical center, kfar saba, israel 2 doctoral program in music therapy, institute for communication and psychology, aalborg university, denmark 3 school for creative arts therapies, university of haifa, israel 4 sackler faculty of medicine, tel aviv university, tel aviv, israel background preterm infants experience noxious stress during their nicu hospitalization. unbuffered stress may negatively influence their autonomic nervous system (ans) maturation thus effecting neurobehavior and development.1 music therapy (mt) is an evidence-based intervention used in neonatal settings.2 when coupled with skin-to-skin care (ssc) it may reduce stress responses in both preterm infants and their parents and enhance family-centered care.3,4 few studies have investigated these interventions combined, and evidence of longer-term effects is missing. aim to investigate the effects of combined, family-centered mt and ssc on preterm-infants’ ans stability and their parents’ mental well-being. methods an embedded mixed-methods design was used.5 a single-center, cluster-randomized trial with two parallel arms was conducted. ten time-clusters of two months, each with five eight participating families, were randomized to either combined mt+ssc or ssc alone. sixty-eight families were offered two weekly sessions of the allocated condition in the nicu, and a follow up at home at three-months corrected age (ca). the primary outcome was stabilization of the ans as defined by change in the high frequency component of heart rate variability during the second session. secondary outcomes included additional hrv measures, attachment, and parental anxiety. outcomes were analyzed on an intention-to-treat basis using linear mixed-effects models. a qualitative exploration of parents’ experiences regarding mt sessions was performed. ten parents participated in semi-structured interviews at four-months ca. data was analyzed using thematic analysis methodology within a reflexive hermeneutic approach. the mt intervention was based on the “first sounds: rhythm, breath and lullaby” model6, which focuses on the parent-infant dyad. key elements include specific attention to infant’s cues, parent, and environment, and to their reciprocal interaction; rhythmic entrainment; use of parents’ voice and musical heritage; and encapsulating the sounds of the intrauterine environment. guidelines for the intervention afforded high flexibility to address alternating parental or infants’ needs, and to offer additional means for musical engagement. results/finding mt+ssc improved infants’ ans stability, as indicated by a greater increase in hf power (mean difference 5.19m2/hz, se=1.27, p < 0.001) (95% confidence interval 0.87 to 2.05), as compared to ssc alone. hf power is an indicator of a relaxed state in the ans, representing improvement in autonomic regulation, which highly impacts preterm-infants’ processes of recovery and maturation.7 other hrv indices as well as parental anxiety showed a nonsignificant tendency favoring mt+ssc condition. main themes derived from parents’ interviews revealed that mt+ssc sessions were perceived as unique moments solely dedicated to connecting with their baby, and as such, essentially different from daily medical routines. singing was experienced as means to provide “something deep from within themselves” and enhanced feelings of self-coping by overcoming personal difficulties. parents reported that mt has promoted relaxation for both them and their baby, leading to feelings of intimacy and being-in-the moment. mt informed and motivated their use of music throughout the hospitalization period and was incorporated into their everyday lives. relevance to nidcap this study relates to core components of the nidcap model, namely, modulation of stress in the nicu, promotion of infant’s behavioral organization, and enhancement of early parentinfant bonding.8 implementation of family centered mt during ssc might provide additional opportunities to enhance stability, intimacy, and bonding in the nicu. conclusions combined mt+ssc contributes to preterm-infants’ ans stability and stress reduction, laying an important foundation for neuro-behavioral and psycho-emotional development. familycentered mt is highly attuned to parents’ and infants’ needs and may support the dyad to engage musically and enhance meaningful interactional moments during hospitalization. studies evaluating longer-term effects of mt on preterm infants’ development are warranted, as well as the investigation of longer therapeutic processes and their impact on parents’ experiences. family centered music therapy for preterm infants and their parents in the nicu: a mixed-method study (references on p. 27) doi: 10.14434/do.v15i1.33781 developmental observer • 2021 • 21 p u b l i c at i o n s 2 0 2 0 2 0 2 1 below are selected publications from late 2020 to early 2021 relevant to nidcap. doi: 10.14434/do.v14i2.33004 2020 angot f, van vooren v, castex c, glorieux i. casper c. behavioral changes in preterm children during nasogastric tube feeding. comparative study of manual administration by parents versus mechanical administration via electric syringe pump. early human development. 149, 2020. doi: http://dx.doi.org/10.1016/j.earlhumdev.2020.105151 this randomized, crossover study examined the behavioral changes of preterm infants during nasogastric tube feeding: manual milk administration by parents (map) versus electric syringe administration (esa) over a 30-minute period. method: preterm infants less than 33 weeks of age and over 7 days of life were included. a video recording was performed to assess the behavioral response. fifteen preterm infants with a median gestational age of 30.1 weeks and a median birth weight of 1.210 g were included from march to october 2012. the facility, environment, and state of alertness of the infants were similar in both groups. signs of well-being were significantly more prevalent in the map group versus the esa group (36.2 ( ± 8.0) versus 30.7 ( ± 9.5)), (p = 0.04), particularly “hand-to-mouth, mouth gestures, seeking suction and sucking”. although not significant, motor withdrawal signs were more apparent and fluctuating in the esa group. qualitative analysis of nidcap observations confirms this data. browne jv, jaeger c, kenner c. executive summary: standards, competencies, and recommended best practices for infant and family-centered developmental care in the intensive care unit. journal of perinatology, suppl. 1. 2020, 40: 5-10. doi:10.1038/s41372-020-0767an interprofessional and parent committee utilized a systematic review and consensus process to evaluate the evidence for intensive care practice. infantand family-centered developmental care was described, practice components identified, and evidence-based standards and competencies articulated. consensus process results included articulation of standards, competencies and recommended best practices for infant and family centered developmental care (ifcdc), including components of systems thinking, positioning and touch, sleep and arousal, skin-to-skin contact, reduction of pain and stress for infants and families, and feeding. successful ifcdc-recommended practices provide opportunities to integrate the family with the interprofessional team, standardize practice, and improve outcomes. charafeddine l, masri s, sharafeddin sf, kurdahi badr l. implementing nidcap training in a low-middle-income country: comparing nurses and physicians' attitudes. early human development. 147, 2020. doi: http://dx.doi. org/10.1016/j.earlhumdev.2020.105092 the newborn individualized developmental care and assessment program (nidcap) provides a developmentally supportive environment for preterm infants and their families. few studies evaluated staff perceptions about nidcap implementation and its effect on infant and parents and working conditions. a cross-sectional anonymous online survey of 57 nicu staff (29 nurses and 28 doctors) who were present at least one year prior to and during the implementation of nidcap training were included. the implementation of nidcap in a low-middle income country was perceived as a positive experience for both nurses and doctors. it was thought to have improved infant care and wellbeing, as well as the staff relationship with parents, however working conditions remained a challenge. more studies are needed to address areas of improvement for implementation. eskandari z, akrami f, nejad mr, almasi-hashiani a, heidarzadeh m. assessing family-centered care in iranian nicus from perspective of neonatal individual developmental care. iranian journal of neonatology. 2020, 11(4): 87-92. doi: http://dx.doi.org/10.22038/ ijn.2020.47189.1808 this national cross-sectional study was conducted in a total of 23 nicus from nine universities of medical sciences, in seven provinces of iran. family-centered developmental care was assessed in six different domains, including the philosophy of the nursery, family communication, family support, family resources, admission and discharge planning, and decision-making. a total of 29 items, extracted from the nursery assessment manual, were assessed. the mean scores in all domains were weak, and the total score for all domains was 34.18 (95% ci: 33.75-34.60) out of 100. the mean scores were 30 in the philosophy of nursery, 43.47 in family communication, 26.71 in family support, 35 in family resources, 45 in admission and discharge planning, and 25 in decision-making. the lowest score was reported for decision-making, and the highest score was reported for admission and discharge planning. since family-centered developmental care in iran is not favorable, the obtained findings suggest the development of a suitable plan to upgrade family-centered developmental care as well as comprehensive nicu care, including developmental care. http://dx.doi.org/10.1016/j.earlhumdev.2020.105151 http://dx.doi.org/10.1016/j.earlhumdev.2020.105092 http://dx.doi.org/10.1016/j.earlhumdev.2020.105092 http://dx.doi.org/10.22038/ijn.2020.47189.1808 http://dx.doi.org/10.22038/ijn.2020.47189.1808 22 • 2021 • developmental observer eskandari z, seyedfatemi n, haghani h, almasi-hashiani a, mohagheghi p. effect of nesting on extensor motor behaviors in preterm infants: a randomized clinical trial. iranian journal of neonatology. 2020, 11(3): 64-70. doi: http://dx.doi.org/10.22038/ijn.2020.42355.1703 in this randomized controlled trial, 44 clinically stable preterm infants, admitted to the nicu, were recruited and randomly divided into two groups of control and intervention. the routine of the unit was to take care of infants on a flat mattress. the intervention was a u-shaped cloth nest in which the intervention group was bedded for seven days. the control group consisted of infants who were normally cared for without any containment supports (e.g. nests). all infants were videotaped before and on the last day of the intervention. the motor behaviors, as defined in the newborn individualized developmental care and assessment program (nidcap) sheet, were analyzed in each of the films. according to the findings, supporting the preterm infant body even by accessible materials could enhance their neurodevelopmental strengths and motor behavior stabilities. foladi n, farahani as, nourian m, faghihzadeh e, mojen lk, gholami s, goudarzi f., barriers to the implementation of "newborn individualized developmental care and assessment program" from the perspectives of nurses and physicians. iranian journal of neonatology. 2020, 11(4): 1420. doi: http://dx.doi.org/10.22038/ijn.2020.46116.1774 the study aimed to investigate the barriers to the implementation of nidcap from the perspectives of nurses and physicians. this descriptive-comparative included 100 nurses and 21 physicians working in the neonatal intensive care unit (nicu). data were collected using a researcher-made questionnaire. the validity and reliability of the questionnaire were determined in this study. according to the findings of this study, environmental-structural barriers were considered the main hurdles to the implementation of nidcap. therefore, it is recommended that hospital administrators make efforts to eradicate the existing barriers by making appropriate decisions in order to improve the quality of this method of care. khosravan s, khoshahang m, heidarzadeh m, basirimoghadam m. effect of nidcap home care follow-up program of preterm newborns on maternal anxiety and stress. annali di igiene. 2020, 32(6): 627-634. doi: http://dx.doi. org/10.7416/ai.2020.2384 (italy) the newborn individualized developmental care and assessment program (nidcap) is designed to empower the parents in comprehensively caring for their preterm baby after discharge from the hospital. the present research was intended to study the effects of nidcap follow-up on the stress and anxiety of the mothers. in this clinical trial, 20 mothers of preterm babies with the gestational age of 26 to 32 weeks were studied. nidcap was performed during the hospital stay and twice after discharge. the control group received routine care without nidcap. anxiety and stress of the mothers were assessed using the spielberger and cohen questionnaires. at baseline, there were no statistically significant differences between the experimental and the control groups. after the intervention, the average score of anxiety was significantly lower among mothers in the experimental group compared to the control group (p=0.009). nidcap also reduced the stress of the mothers in the experiment group (p=0.033). implementation of nidcap and its home follow-up was effective in reducing the stress and the anxiety of the mothers of preterm babies. implementation of nidcap for mothers of preterm babies is recommended to all hospitals of the country. lopez-maestro m, de la cruz j, perapoch-lopez j, gimenonavarro a, vazquez-roman s, alonso-diaz c, munozamat b, morales-betancourt c, soriano-ramos m, pallasalonso c. eight principles for newborn care in neonatal units: findings from a national survey. acta paediatrica. 2020, 9(7): 1361-1368. doi: 10.1111/apa.15121 a european expert group established eight ‘principles of care’ in 2018 that define neurodevelopmental and family-centred care. the implementation of each principle was assessed by a survey sent to level-iii spanish units. a principle was considered to be implemented if all answers to the principle-associated questions were positive. the response rate was 84.5% (65/77). no unit had implemented eight principles. principle 1 (free parental access) was implemented in 21.5% of the centres; principle 2 (psychological support) 40%; principle 3 (pain management) 7.7%; principle 4 (environmental influences) 29%; principle 5 (postural support) 84.6%; principle 6 (kangaroo-care) 67.7%; principle 7 (breastfeeding) 23% and principle 8 (sleep protection) in 46%. in units attending ≥50 very low birth weight (vlbw) infants, four or more principles had been implemented in 31% vs 13% <50 vlbw neonates (odds ratio 3.0 ci 95% 0.9-10.1, p .07). the principle with the highest implementation was related to newborn body positioning. pain management was the principle with lowest implementation. more principles for ifcdc tend to be implemented in units providing care for a higher number of vlbw infants. welch mg, barone j, porges s, hane a, kwon k, ludwig rj, stark ri, surman al, myers mm, kolacz j. family nurture intervention in the nicu increases autonomic regulation in mothers and children at 4-5 years of age: follow-up results from a randomized controlled trial. plos one 2020, 15 (8):e0236930. doi:10.1371/journal.pone.0236930 a subset of infants and mothers (48% of infants, 51% of mothers) randomly assigned to either standard (sc), or sc plus family nurture intervention (fni) in the nicu in a prior randomized control trial (rct) (clincaltrials.gov; 2020. nct01439269) returned for follow-up assessments when the http://dx.doi.org/10.22038/ijn.2020.42355.1703 http://dx.doi.org/10.22038/ijn.2020.46116.1774 http://dx.doi.org/10.7416/ai.2020.2384 http://dx.doi.org/10.7416/ai.2020.2384 developmental observer • 2021 • 23 children were 4 to 5 years corrected age (ca). both children and mothers in the fni group had significantly greater levels of rsa compared to the sc group (child: mean difference = 0.60, 95% ci 0.17 to 1.03, p = 0.008; mother: mean difference = 0.64, 95% ci 0.07 to 1.21, p = 0.031). in addition, rsa increased more rapidly in fni children between infancy and the 4 to 5-year follow-up time point (sc = +3.11±0.16 loge msec2, +3.67±0.19 loge msec2 for fni, p<0.05). these results show that the rate of increase in rsa from infancy to childhood is more rapid in fni subjects. although these preliminary followup results are based on approximately half of the subjects originally enrolled in the rct, they suggest that fni-nicu led to healthier autonomic regulation in both mother and child, when measured during a brief face-to-face socioemotional interaction. a pavlovian autonomic co-conditioning mechanism may underly these findings that can be exploited therapeutically. 2021 aita m, de clifford faugere g, lavallee a, feeley n, stremler r, rioux e, proulx mh. effectiveness of interventions on early neurodevelopment of preterm infants: a systematic review and meta-analysis. bmc pediatrics. 21(1):210, 2021 04 29. doi: 10.1186/s12887-021-02559-6 findings of 12 studies involving 901 preterm infants were synthesized. three studies were combined in a meta-analysis showing that compared to standard care, the nidcap intervention is effective in improving preterm infants' neurobehavioral and neurological development at two weeks corrected age (ca). two other studies were combined in a meta-analysis indicating that parental participation did not significantly improve preterm infants' neurobehavioral development during nicu hospitalization. for all other interventions (i.e., developmental care, sensory stimulation, music and physical therapy), the synthesis of results shows that compared to standard care or other types of comparators, the effectiveness was either controversial or partially effective. the overall quality of evidence was rated low to very low. future studies are needed to identify interventions that are the most effective in promoting preterm infants' early neurodevelopment during nicu hospitalization or close to term age. interventions should be appropriately designed to allow comparison with previous studies and a combination of different instruments could provide a more global assessment of preterm infants' neurodevelopment and thus allow for comparisons across studies.= artese c, paterlini g, mascheroni e, montirosso r, developmental care study group (dcsg) of the italian neonatology society: cavicchioli p, bertoncelli n, chiandotto v, strola p, simeone n, calciolari g, ferrari f. barriers and facilitators to conducting kangaroo mother care in italian neonatal intensive care units. journal of pediatric nursing. 2021, 57: e68-e73. doi 10.1016/j. pedn.2020.10.028 a survey design was conducted in 86 newborn intensive care units to determine both obstacles and supports to implementation of kangaroo mother care (kmc). the survey investigated three main specific areas including: a) unit's characteristics; b) unit's policies toward parents; c) unit's kmc practice and policies. eighty-one nicus provided kmc. these 81 nicus had less restrictive parental access policies (chi2 = 7.373, p = .007). more than 70% of the units did not have adequate facilities for parents. kmc daily length was positively predicted (r2 = 0.18, f = 7.91, p = .001) by repeated sessions and documentation of kmc. the implementation of kmc is characterized by different barriers and facilitators that determine the parent's possibility to provide kmc. structural factors (e.g., adequate space and facilities) can support families in providing kmc. a unique result of this survey is that kmc documentation in medical records appears critical for improving its practice. although most of the italian units provide kmc as a routine practice, improving its practical support would be beneficial to its implementation. a more formalized approach to kmc may strengthen staff habits to consider kmc as a standard care treatment. chandebois l, nogue e, bouschbacher c, durand s, masson f, mesnage r, nagot n, cambonie g. dissemination of newborn behavior observation skills after newborn individualized developmental care and assessment program (nidcap) implementation. nursing open. 2021. doi: http://dx.doi.org/10.1002/nop2.904 to assess nurses' ability to observe newborn behavior after in situ training provided by caregivers with advanced practice certification in the newborn individualized developmental care and assessment program (nidcap). twelve nurses viewed 20-min films showing the behavior of 10 premature newborns before, during and after the usual caregiving. the behavior was rated on an observation sheet with 88 items distributed into six systems. the responses were compared to the reference ratings established by two professionals certified for this program. despite less accurate observations during care and for some components, the nurses generally showed a satisfactory ability to observe newborn behavior after training by nidcap expert professionals. the dissemination of observation skills among caregivers may result in an improved quality of patient care and better communication among professionals in a department of neonatology. epstein s. bauer s. stern ol. preterm infants with severe brain injury demonstrate unstable physiological responses during maternal singing with music therapy: a randomized controlled study. european journal of pediatrics, 2021, 180, (5): 1403-1412. doi:10.1007/s00431-020-03890-3 in this prospective, randomized intervention, 35 preterm infants with severe brain injury who underwent skin-to-skin contact (ssc) with or without maternal singing during music therapy (mt) were evaluated for physiological responses, including autonomic nervous system stability (low frequency (lf)/high frequency (hf) power), heart rate, respiratory rate, oxygen saturation, and behavioral state. higher mean +/standard deviation http://dx.doi.org/10.1002/nop2.904 24 • 2021 • developmental observer (sd) lf/hf ratio (1.8 +/0.7 vs. 1.1 +/0.25, p = 0.01), higher mean +/sd heart rate (145 +/15 vs. 132 +/12 beats per minute, p = 0.04), higher median (interquartile range) +infant behavioral state (nidcap manual for naturalistic observation and the brazelton neonatal behavioral assessment) score (3 (2-5) vs. 1 (1-3), p = 0.03), and higher mean +/sd maternal anxiety (state-trait anxiety inventory) score (39.1 +/10.4 vs. 31.5 +/7.3, p = 0.04) were documented in ssc combined with maternal singing during mt, as compared to ssc alone. a unique mt intervention should be designed for preterm infants with severe brain injury and their mothers. griffiths n, james-nunez k, spence k. crowle c, pettigrew j, loughran-fowlds a, samra ha. the evolution of an interdisciplinary developmental round in a surgical neonatal intensive care unit. advances in neonatal care. 2021, 21 (1) (pp e2-e10). doi: http://dx.doi.org/10.1097/ anc.0000000000000741 a retrospective audit of developmental round key performance criteria undertaken over a 4-year period (2015-2018). more than 300 developmental consults and 2000 individualized developmental recommendations occurred annually. parental presence during the developmental round increased by 10%, from 48% to 58%, during the audit period. literature has supported the use of developmental round interventions; however, minimal data have been reported to date. this article provides retrospective audit data of a developmental round intervention in the snicu with a focus on data over four years to highlight key areas, including the structure and process, recommended educational standards for team members, and parental engagement, as key markers for developmental round efficacy. future research should focus on the link between the developmental round intervention and long-term neonatal outcomes. herrera s, pierrat v, kaminski m, benhammou v, bonnet al, ancel py, germa a. factors associated with non-nutritive sucking habits at 2 years of age among very preterm children: epipage-2 cohort study. paediatric and perinatal epidemiology. 2021, 35(2):217-226. doi 10.1111/ ppe.12725 the study was based on data from epipage-2, a french national prospective cohort study of preterm births during 2011 that included 2593 children born between 24 & 31 weeks’ gestation. the frequency of non-nutritive sucking habits (nnshs) at 2 years was 69% in the overall sample, but higher among girls (adjusted risk ratio [rr] 1.12, 95% confidence interval [ci] 1.05, 1.17), children born from multiple pregnancies (rr 1.07, 95% ci 1.00, 1.11), children who were fed by nasogastric tube (rr 1.07, 95% ci 1.01, 1.13), or those who benefitted from developmental care programs (rr 1.10, 95% ci 1.02, 1.19). the nnshs frequency was lower if mothers were not born in france (rr 0.70, 95% ci 0.64, 0.77), children had 2 or more older siblings (rr 0.88, 95% ci 0.82, 0.96), or children were breast-fed at discharge (rr 0.90, 95% ci 0.85, 0.95). nnshs at 2 years seemed associated with cultural background, development care programs, and breast feeding. whether nnshs at 2 years among very preterm children are associated with future maxillofacial growth anomalies deserves further attention. litmanovitz i. silberstein d, butler s, vittner d. care of hospitalized infants and their families during the covid-19 pandemic: an international survey. journal of perinatology. 2021, 41(5): 981-987. doi:10.1038/s41372021-00960-8 this research explored changes in family-centered care practices for hospitalized infants and families due to the covid-19 pandemic. this exploratory descriptive study used a 49-item online survey, distributed to health care professionals working with hospitalized infants and families. the sample consisted of 96 participants from 22 countries. prior to the covid-19 pandemic, 87% of units welcomed families and 92% encouraged skin-toskin care. during the pandemic, family presence was restricted in 83% of units, while participation in infant care was restricted in 32%. medium-sized (20–40 beds) units applied less restriction than small (<20 beds) units (p = 0.03). units with single-family rooms that did not restrict parental presence, implemented fewer restrictions regarding parents’ active participation in care (p = 0.02). restrictions to families were not affected by geographic infection rates or developmental care education of health care professionals. restrictions during the pandemic increased separation between the infant and family. levesque v, johnson k, mckenzie amy, nykipilo a, taylor b, joynt c. implementing a skin-to-skin care and parent touch initiative in a tertiary cardiac and surgical neonatal intensive care unit. advances in neonatal care. 2021, 21(2):e24-e34. doi 10.1097/anc.0000000000000770 the purpose of this quality improvement project was to increase skin-to-skin care (ssc), parental holds, and parent touch events for infants in our cardiac and surgical neonatal intensive care unit. when traditional ssc was not possible, alternative holds and alternative parent touch (apt) methods were encouraged. implementation included educational tools and resource development, simulations, peer champions, in-class teaching, and team huddles. decisions around the type of hold and parent touch were fluid and reflected complex infant, family, staff, and physical space needs. given its initial scarcity, there was an increased frequency of ssc and variety of holds or apt events. skin-to-skin care, holds, and apt practices are feasible and safe for term and preterm infants receiving highly instrumented and complex cardiac and surgical care. future research regarding the intervention's impact on neurodevelopmental outcomes of infants and on parent resilience in the surgical and cardiac neonatal intensive care unit is warranted. http://dx.doi.org/10.1097/anc.0000000000000741 http://dx.doi.org/10.1097/anc.0000000000000741 developmental observer • 2021 • 25 menke b, hass j, diener c, pöschl j. family-centered music therapy—empowering premature infants and their primary caregivers through music: results of a pilot study. plos one. 2021, 16(5): e0250071. doi:10.1371/journal. pone.0250071 the aim of this pilot rct was to determine the influence of interactive live-improvised music therapy interventions on both the physiological development of premature infants and stress factors in both mothers and fathers. a total of 50 parent-infant pairs were analyze for their physiological development at discharge 47 mothers and 30 fathers completed the questionnaires on parental stress factors. the results suggests that a live-improvised interactive music therapy intervention for preterm infants and their parents has a beneficial effect on the therapy duration before discharge from hospital. group comparisons showed a significant reduction in the duration of caffeine therapy, the duration of nasogastric/orogastric tube feeding, and the length of hospitalization in the group of infants receiving music therapy. the results show fathers experience the same level of stress as mothers of premature infants. interestingly, the anxiety levels reported by fathers are lower compared to these reported by mothers. the results suggest that music therapy interventions may directly empower the parents by reducing their stress levels, promoting relaxation and enhancing their well-being. at time of discharge from the hospital, mothers of the treatment group showed a statistically significant reduction in stress, anxiety and postpartum depression. at the same time, they showed an increase in their maternal competencies. fathers of the treatment group also showed a statistically significant reduction in stress and state anxiety. several limitations were identified. vitale fm, chirico g, lentini c. sensory stimulation in the nicu environment: devices, systems, and procedures to protect and stimulate premature babies. children. 2021, 8 (5): 334. doi:10.3390/children8050334 the purpose of this review was to investigate the effects of nicu noise pollution on preterm infants and parents. the authors focused on the systems and projects used to control and modulate sounds, as well as on those special devices and innovative systems used to deliver maternal sounds and vibrations to this population. the results showed beneficial effects on the preterm infants in different areas such as physiological, autonomic, and neurobehavioral development. although most of these studies highlight positive reactions, there is also a general acknowledgement of the current limitation: small and heterogeneous groups, lack of structured variable measurements, systematic control groups, longitudinal studies, and normative values. the mother’s presence is always preferred, but the use of music therapy and the devices analyzed, aim to soften her absence (not replace her presence), through familiar and protective stimuli, which was a very powerful aid during the covid-19 pandemic. kato y, takemoto a, oumi c, hisaichi t, shimaji y, takaoka m, moriyama h, hirata k, wada k. effects of skin-toskin care on electrical activity of the diaphragm in preterm infants during neurally adjusted ventilatory assist. early human development, 2021, 157, https://doi.org/10.1016/j. earlhumdev.2021.105379 this study aimed to evaluate the effect of skin to skin care (ssc) on electrical activity of the diaphragm (edi) and vital signs in premature infants who are intubated and under neurally adjusted ventilatory assist ventilation. this was an observational cross-over study. data were measured in three periods: before (pressc period), during (ssc period), and after (post-ssc period) ssc. stable 30-min data in each period were extracted. thirty-four ssc procedures were performed in 14 preterm infants with a median gestational age of 25.3 weeks (interquartile range, 24, 26.4) and a birth weight of 659 g (566, 694). the median postnatal age was 41 days (31, 53) at the study with a median postmenstrual age of 31.3 weeks (30.4, 32.5). median values of edi peak, edi minimum, respiratory rate, spo2, and heart rate were measured in each condition. the kruskal–wallis test with bonferroni multiple comparisons was used to compare each parameter in each period. median edi peak and edi minimum values were significantly lower during ssc compared with preand post-ssc, without any change in respiratory rate, spo2, or heart rate. the conclusion was that respiratory efforts as evaluated by edi are significantly reduced during ssc in ventilated preterm infants. castro dias c, costa r, miguel pinto t, figueiredo b. the infant behavior questionnaire – revised: psychometric properties at 2 weeks, 3, 6 and 12 months of life. early human development, 2021, 153. https://doi.org/10.1016/j. earlhumdev.2020.105290 temperament characteristics are key elements for infants’ development. the infant behavior questionnaire – revised (ibqr) is one of the most used measures to assess temperament in infants aged between 3 and 12 months. its reliability and factor structure have not yet been examined in infants younger than 3 months. the aim was to analyze the reliability of the ibq-r at 2 weeks and the ibq-r factor structure from 2 weeks to 12 months of life. a longitudinal repeated measures design was used. three hundred mothers completed the ibq-r when their infants were 2 weeks, and 3, 6 and 12 months. at 2 weeks the proportion of “non-applicable” responses was higher in duration of orienting, high intensity pleasure, approach and smiling and laughter scales. the cronbach’s alpha for the ibq-r dimensions ranged between 0.62 and 0.63 and the mcdonald’s omega ranged between 0.67 and 0.80, all dimensions exhibited a meanscale correlation above 0.15, and more than half of the scales revealed a scale-dimension correlation higher than 0.30. the same factor structure was found at 2 weeks, and at 3, 6, and 12 months. the ibq-r may be applied in the first weeks of life and its factor structure remains stable when applied across different ages throughout infancy. https://doi.org/10.1016/j.earlhumdev.2021.105379 https://doi.org/10.1016/j.earlhumdev.2021.105379 https://doi.org/10.1016/j.earlhumdev.2020.105290 https://doi.org/10.1016/j.earlhumdev.2020.105290 compared to what we ought to be we are only half awake. our fires are dampened, our drafts are checked. we are making use of only a small part of our physical and mental resources. stating the thing broadly, the human individual lives far within its limits.william james (january 11, 1842 – august 26, 1910). jean baptiste pierre antoine de monet, chevalier de lamarck, or simply lamarck, was born in france on august 1, 1744, and died in poverty on december 28, 1829. he was one of the first evolutionists and is best known for his theory of inheritance of acquired characteristics.1 this theory proposes that an organism, forced by environmental pressures to change in order to adapt, will pass such changes on to its offspring. lamarck believed for example that elephants had to stretch their trunks to reach deepwater sources and high branches, and thus their offspring inherited long trunks. charles robert darwin (1809 – 1882) an english naturalist thought very highly of lamarck, and built on his theory. he established that all species have descended over time from common ancestors, and that this branching pattern of evolution resulted from a process he called natural selection, which he published in his 1859 book on the origin of the species by means of natural selection.2 darwin’s thinking largely prevails today. trofim denisovich lysenko (18981976) a russian biologist, although much later than darwin, tried to reverse darwinism by going back to lamarck and taking lamarck’s theory to the extreme. he argued for exclusively environmentally acquired inheritance, and attempted to discredit any genetic influence.3 in recent years it has become increasingly apparent that the dichotomy of genetic versus acquired inheritance is not only unnecessary but incorrect. the field of epigenetics has begun to identify that both darwin and lamarck are correct and that phylogenetic and ontogenetic variability are the product of natural selection on the basis of genetics and of acquired traits. a whole new vista has opened. why would this column concern itself with such basic biological processes? i would like to draw all nidcap professionals’ attention to the emerging field of epigenetics which is potentially relevant for the understanding of processes underlying the effectiveness of nidcap, and likely will increase the urgency with which nidcap will become the care in all nicu settings. at its most basic, epigenetics is the study of changes in gene activity that do not involve alterations to the genetic code yet, 2011 vol. 4 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international message from the nfi president lamarck, darwin and the science of nidcap: epigenetics in the nicu “in the long history of humankind (and animal kind, too) those who learned to collaborate and improvise most effectively have prevailed.” charles darwin (1809-1882) continued on page 2 table of contents message from the president ......... 1 nidcap training centers from around the world ...................................... 5 family voices ............................................. 6 nidcap profile .......................................... 8 supporting families ................................ 10 current developmental research ........ 11 developmental resources .................... 12 2 • 2011 • developmental observer nevertheless, get passed down to at least the next generation, and in some cases to further generations as well. these patterns of gene expression are governed by cellular material—the epigenome—that sits on top of the genome, just outside or above it, hence the prefix epi-, meaning “above.” it is these epigenetic “marks” that tell the genes to switch on or off. through epigenetic marks, environmental factors like diet, prenatal nutrition, and stress may make an imprint on genes that are passed from one generation to the next.4 epigenetics brings both good and bad news. the bad news is that lifestyle choices like smoking and over-eating may change the epigenetic marks on top of the genes’ dna in ways that cause the genes of obesity, for example, to express themselves too strongly, and the genes for longevity, to express themselves too weakly. it is known that those who smoke and overeat have shorter life expectancies. it is now clear that those behaviors will also predispose the next generation (i.e., the children of smokers and overeaters), even before they are conceived, to disease and earlier death. the good news is that as a first step, epigenetic marker drugs are beginning to be developed for the suppression of disease (i.e., the turn-off of disease genes such a cancer, schizophrenia, alzheimer’s and likely many others). joseph ecker, a plant biologist at the salk institute and a leading epigenetic scientist, likens the genome to the hardware, and the epigenome to the software, of the exquisitely complex human body. (the biology of genomes (2008) with joseph ecker; interviewed by jan witkowski, cold spring harbor symposium, april 7, 2009; making science visible www.scivee.tv). darwin taught that it takes many generations for a genome to evolve. researchers are finding that it takes only the addition of a methyl group to change an epigenome. a methyl group is a basic unit in organic chemistry—one carbon atom attached to three hydrogen atoms. when a methyl group attaches to a specific spot on a gene—a process called dna methylation—it may completely change the gene’s expression; it may turn it off or on, it may dampen it, or make it stronger. the importance of dna methylation in altering the characteristics of an organism was proposed in the 1970s. it was verified in 20035 by experiments with a prenatal mouse diet rich in b vitamins (folic acid and vitamin b12) that initiated changes which altered the gene expression for obesity in a mouse species to produce normal offspring, without altering the genomic structure of the mouse; the changes lasted for 13 generations from the original vitamin b supplementation. other studies have shown epigenetic changes that lasted over 40 generations.6,7 the question becomes whether epigenetic changes can become permanent. it is important to remember that epigenetic changes are not evolution. they do not change dna but represent a biological response to an environmental stressor. that response may be inherited through many generations via epigenetic marks, but if the environmental pressure is removed, the epigenetic marks will eventually fade, and the dna code will—over time—begin to revert to its original programming. at least that is what the literature appears to indicate. moreover, it is becoming increasingly clear that epigenetic changes take place not only in terms of physical aspects, but also in behavioral psychological aspects of organisms, such as memory ability, which may be improved from one generation to the next via epigenetics. mice with genetic memory problems, when exposed to an environment rich with toys, exercise and extra attention, show significant improvement in neural transmission key to memory formation. their offspring also show long-term neural transmission improvement, even when the offspring received no extra attention.8 epigenetics is perhaps the most important discovery since the gene.9 marcus pembrey10,11 speculates that the environmental pressures and social changes of the industrial age may have become so powerful that evolution has begun to demand that human genes respond faster. human dna may have to react within a few generations not over many generations and millions of years. this compressed timetable would mean that while the genes themselves would not have had enough years to change, the epigenetic marks atop the dna would. examples include the well-documented findings from the alspac (avon longitudinal study of parents and children) study, based on a sample size of 14,024 pregnant mothers in 1991–1992. it was designed to show how the individual’s genotype combines with environmental pressures to influence health and development. this study found that baby lotions containing peanut oil are responsible for the rise in peanut allergies; that high maternal anxiety during pregnancy is associated with the child’s later development of asthma; that small children who are kept too clean are at higher risk for eczema; and that the sons of men who smoke in pre-puberty are at higher risk for obesity and other health problems well into adulthood, than the sons a semi-annual publication of the nidcap federation international © 2011. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd nidcap federation international (nfi) contributions we would like to thank all of our individual donors and the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation pritzker early childhood foundation developmental observer developmental observer • 2011 • 3 of fathers who did not start to smoke so early. the implications of these studies are incredible. the human genome contains approximately 25,000 genes; the human epigenome thus contains an as yet unknowable number of patterns of epigenetic marks, that may be due to dna methylation (silencing) and histone production (activation and potentiation) or both, and which may be passed onto the next generation and beyond. qiu’s12 illustration depicts these processes. memory is not the only psychological function addressed to date. recently epigenetic regulation differences due to early maternal behavior have been shown to alter glucocorticoid receptors in human brain especially in the hippocampus. glucocorticoid receptor expression has been found to be closely associated with a developmental history of familial adversity such as child abuse. child abuse has also been shown to be associated with an increase in pituitary adrenocorticotropic hormone (acth) responses to stress,13 of particular relevance since pituitary acth directly reflects central activation of the hypothalamic-pituitaryadrenal (hpa) stress response, and hippocampal glucocorticoid receptor activation dampens hpa activity.14 these findings are consistent with those from studies with rodents and primates that show that persistent disruptions of mother-infant interaction are associated with increased hypothalamic corticotrophinreleasing hormone expression and increased hpa response to stress.15-17 a study of human cord blood found a correlation of maternal mood and neonatal methylation status of an important glucocorticoid receptor.18 increased site specific methylation of a response element of this glucocorticoid receptor is linked to an increased cortisol response in the infant. maternal mood disorders are known to be associated with decreased maternal sensitivity and impaired mother-infant interactions19 as well as increased risk for offspring depression.20 thus transmission of vulnerability for depression from mother to infant likely occurs at least in part through epigenetic modification of genomic regions that are implicated in the regulation of stress. thankfully epigenetic changes may also work to make up for an otherwise likely detrimental situation. evidence21 demonstrates that rat mothers that show increased licking of their pups, and increased arched-back nursing (i.e., the expected form of nursing of rat pups) will alter their offspring’s epigenome at the glucocorticoid receptor gene promoter level in the hippocampus; such that, rat pups who receive this form of good mothering have lower dna methylation and higher histone acetylation, and transcription factor binding to the glucocorticoid receptor promoter gene. as a result, these pups handle stress more adeptly and display calmer behavior over the first weeks after birth, than do pups who receive less licking by their mothers and archedback nursing. the negative effects of the poor mothering were shown to be reversible by cross-fostering the methylated pups to good mothers (and to prove the mechanism, by an infusion of histone de-acetylase inhibitor that removed the dna methylation and its negative effects.) thus the epigenomic state of a gene may be established for the good or bad through behavioral programming and in turn appears reversible in either direction. this overview of recent epigenetic research makes it quite plausible that separation of the mother from the infant, in the very immature state of a preterm birth, and the experiences of the nicu for such a preterm infant, trigger a whole cascade of negative effect methylation of genes with alterations at many different sites too daunting to envision. such changes, no doubt, are to a large extent responsible for these infants’ cumulative increases in stress and maladaptive responses that may lead to lifelong, if not intergenerational altered brain states and functioning. nidcap thus may work at the level of preventing such untoward epigenetic effects by supporting the infant’s optimal genomic rather than distorted epigenomic blueprints. “good mothering” and “good parenting” in the nicu becomes even more critical as does reversal of the detrimental stress-induced epigenetic changes that likely accompany the many, while necessary, often very painful procedures that assure the infant’s survival. the mother and her surrogates who have an affective long-term caring investment in the infant will limit and possibly extinguish these harmful effects by their dedicated continued figure: stretches of dna may be inactivated by covalently attaching methyl groups, which may interfere with the binding of transcriptional enzymes, and may also be signals to recruit enzymes that modify associated histones. cells have enzymes called methyltransferases that bind to specific dinucleotides (a cytosine adjacent to a guanine) and attach a methyl group to the cytosine. methylated dna is silent dna. (with permission from: qiu j. unfinished symphony. nature. 2006;441(11):143-145. [page 144]). the two main components of the epigenetic code dna methylation methyl marks added to certain dna bases repress gene activity. histone modification a combination of different molecules can attach to the ‘tails’ of proteins called histones. these alter the activity of the dna wrapped around them. 4 • 2011 • developmental observer developmental care in the moment care and nurturing. seen from this vantage point, the nicu demands extraordinary mothering and parenting, conscious and fully present, while simultaneously meditative, and intuitive. only then will the affective bond and epigenetic protection for the infant throughout hospitalization be realized. the original paradigm of the mother’s breast and parents’ body in close and direct contact will insure this protection. this model will declare incubators and other separations not only unnecessary, but detrimental for infants’ development. mothers, fathers and families deserve and are owed, the nicu’s full support and caring so that their support and caring in turn will guarantee the best opportunity for the infant’s appropriate growth and development. so much for one psychologist’s current epigenetic perspective on the science of nidcap… heidelise als, phd this column was prompted by an invitation to the behavioral epigenetics conference organized by the new york academy of sciences, in boston, oct 29–30, 2010, a discussion with a neurologist colleague, and an article by cloud j, “why your dna isn’t your destiny.” time.com health & science, 2010. references 1. lamarck jdm. zoological philosophy. an exposition with regard to the natural history of animals. 1914. cornell university library, digital collection, ithaca. 2. darwin c. on the origin of the species by means of natural selection, a facsimile of the first edition, 1859. 1964. harvard university press, cambridge. 3. lysenko t. heredity and its variability. 1946. king’s crown press, columbia university publisher, new york, ny. 4. bygren l, kaati g, edvinsson s. longevity determined by ancestors’ overnutrition during their slow growth period. acta biotheoret. 2001; 49:53-59. 5. waterland r, jirtle r. transposable elements: targets for early nutritional effects on epigenetic gene regulation. mol cell biol. 2003; 23:5293-5300. 6. jablonka e, lamb m, lachmann m. evidence, mechanisms and models for the inheritance of acquired characteristics. j theoret biol. 1992; 158:245-268. 7. jablonka e, raz g. transgenerational epigenetic inheritance: prevalence, mechanisms, and implications for the study of heredity and evolution. quart rev biol. 2009; 84:131-176. 8. arai j, li s, hartley d, feig l. transgenerational rescue of a genetic defect in long-term potentiation and memory formation by juvenile enrichment. j neurosci. 2009; 29:1496 1502. 9. shenk d. the genius in all of us. why everything you have been told about genetics, talent, and iq is wrong. 2010. doubleday, random house, new york. 10. pembrey m, bygren l, kaati g, edvinsson s, northstone k, sjöström m, golding j, team as. sex-specific, male-line transgenerational responses in humans. eur j hum genet. 2006; 14:159-166. 11. kaati g, bygren l, pembrey m, sjöström m. transgenerational response to nutrition, early life circumstances and longevity. eur j hum genet. 2007; 15:784-790. 12. qiu j. unfinished symphony. nature. 2006; 441:143-145. 13. heim c, nemeroff c. the role of childhood trauma in the neurobiology of mood and anxiety disorders: preclinical and clinical studies. biol psychiatry. 2001; 49:1023-1039. 14. mcgowan po, sasaki a, d’alessio ac, dymov s, labonte b, szyf m, turecki g, meaney mj. epigenetic regulation of the glucocorticoid receptor in human brain associates with childhood abuse. nat neurosci. 2009; 12:342-348. 15. meaney m. maternal care, gene expression, and the transmission of individual differences in stress reactivity across generations. annu rev neurosci. 2001; 24:1161-1192. 16. higley j, hasert m, suomi s, linnoila m. nonhuman primate model of alcohol abuse: effects of early experience, personality and stress on alcohol consumption. proc natl acad sci usa.1991; 88:7261-7265. 17. plotsky p, thrivikraman k, nemeroff c, caldji c, sharma s, meaney m. long-term consequences of neonatal rearing on central corticotropin-releasing factor systems in adult male rat offspring. neuropsyhcopharmacology. 2005; 30:2192-2204. 18. oberlander t, weinberg j, papsdorf m, grunau r, misri s, devlin a. prenatal exposure to maternal depression, neonatal methylation of human glucocorticoid receptor gene (nr3c1) and infant cortisol stress responses. epigenetics. 2008; 3:97-106. 19. fleming a, o’day d, kraemer g. neurobiology of mother-infant interactions: experience and central nervous system plasticity across development and generations. neurosci biobehav rev. 1999; 23:673-685. 20. pilowsky d, wickramaratne p, talati a, tang m, hughes c, garber j, malloy e, king c, cerda g, sood a, alpert j, trivedi m, fava m, rush a, wisniewski s, weissman m. children of depressed mothers 1 year after the initiation of maternal treatment: findings from the star*d child study. am j psychiatry. 2008; 165:1136-1147. 21. weaver ic, cervoni n, champagne fa, d’alessio ac, sharma s, seckl jr, dymov s, szyf m, meaney mj. epigenetic programming by maternal behavior. nat neurosci. 2004; 7:847-854. relaxation with supportive caregiving photograph by ann-sofi ingman, rn, bsn developmental observer • 2011 • 5 monique oude reimer, rn and nikk conneman, md the sophia nidcap training center opened in 2004 celebrating with a symposium, “from behaviour to behave,” that brought together topics like general movement and nidcap and its training and implementation. we succeeded in uniting the main players in the dutch developmental group that worked in leiden and amsterdam. there was an enthusiastic response from the audience. the symposium ended with a strong theatrical piece performed by teenagers and professional actors and dancers who addressed the issue of how the environment influences individuals, specifically inner city children and immigrants. the phase of preparation and initiation of the center took us nearly one year. foremost, our center’s activities involved nidcap training of nurses working in our own unit, followed by nurses working in various peripheral hospitals in our region. the sophia nidcap training center is strongly tied into the nicu of the erasmus medical center-sophia children’s hospital. the nidcap trainer is a neonatologist and the center codirector works as the main developmental specialist in the nicu. in the dutch newborn intensive care system, the care for infants who need ventilatory support within their first 28 days after birth is centralized. when infants are breathing on their own and no longer need the academic diagnostic services, they are transferred to high care units in our region. rotterdam, being the largest region in the netherlands to service four million families, has five of those centers spread out in three provinces. the criteria for transfer to a high care unit includes a minimum gestational age of 30 weeks and a minimum weight of 1000 grams. the infants can be on cpap support, since this service is also available in the high care centers. high care centers have neonatologists and nicu high care trained nurses on staff. the first hurdle of nidcap implementation we faced was how to provide good nidcap service when the babies are in the high care units. they spend more time there than they do with us. just an example: when born at 29 weeks, and transferred at the age of 30 weeks, infants are in high and medium care for at least six weeks before going home. listening to parents’ comments, they seemed to be insufficiently prepared and not yet ready for their infant’s transfer to another unit. after the first shock of their infant’s premature birth, parents seem to settle into the nicu. they get to know the nursing and medical team. sometimes, however, within 24 hours, the decision is made to transfer their child. suddenly, parents find themselves in a new unit with less nursing support and a feeling that they have to start all over again. the nursery staff tells them that their infant “is doing great and doesn’t need all that extra support any longer.” often this is difficult for parents to adjust to in such a short time period. our main goal was to support parents to provide care for their infant and to get to know their infant through reading his or her behavioral cues. a way of accomplishing this goal was to have a nidcap trained, developmental nurse on our team support this process. when our nidcap center first opened, this was a part-time job, but it soon developed into a full time position. apart from supporting families, the center’s other goal was to educate the nursing and medical staff. initially, we tried this by organizing lectures and workshops complemented by occasional bedside support. we learned that this was not enough. with support from our nurse manager, who is also part of our sophia nidcap training center management team, we developed a “nidcap individual clinic.” the clinic was offered to the nursery staff. each participant completed a questionnaire about nidcap and formulated questions he/she had concerning this approach to caregiving. each professional was videotaped while providing care to an infant. afterwards, the nurse or doctor received an individual lecture from the developmental specialist and reviewed the videotape together. each participant was asked to read the infant’s behavior and, based on this observation, determine what goals the infant appeared to be working towards. during this time the participant was guided and supported by the developmental specialist. after this session, the nurse/doctor returned to the infant’s bedside to: provide caregiving to the same infant; support the infant’s goals; and implement the recommendations that were created together by the professional and developmental specialist. this proved to be a very powerful teaching tool. we received many requests for practical support from nurses around holland who wanted to learn how to apply nidcap in their daily work, even though they did not fully understand the background and importance of nidcap training. it was because of the many requests received for this kind of developmental support, that our nidcap team decided to provide a teaching model to many units around the country. this model was linked to their specific needs while simultaneously attending to our goal of teaching the essentials of nidcap. nidcap is the sophia nidcap training center nikk conneman and monique oude reimer n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d continued on page 14 6 • 2011 • developmental observer six years ago i discovered an almost secret world that few people experience, but one that leaves a large impact on those who do…newborn intensive care. it is a world that i have not left since. my eldest son, noah, was born at 29 weeks and four days, weighing 3.14 pounds or 1.41 kilograms. it was unexpected and the most surreal experience of my life. i knew nothing about premature babies or neonatal care but i now feel lucky to have chosen a hospital, st. mary’s london (now part of imperial college healthcare nhs trust) with a newborn intensive care unit (nicu) that leads the uk in developmental care. i experienced the family-centered approach to care when i first went to the winnicott baby unit at st. mary’s hospital. noah had been born by emergency cesarean-section and whisked up to the nicu in bubble wrap, in an incubator, and on a ventilator. that was my first, brief glimpse of my son. i would meet him properly six hours later when i went to the unit for the first time. my partner, ben, and i sat and looked at this little miracle —our son. he was so long, but also, so skinny and fragile. he seemed to be covered in so many wires. his face was obscured by his cpap mask, as he was nested in his covered incubator. i felt rather helpless, nervously taking in this new environment. the nursery felt calm, the nurses were welcoming, and his doctor was reassuring. noah’s nurse, elisa, said the words that filled me with joy. “would you like to hold him?” suddenly i felt like his mother, that i was important, that i could do something. her manner, tone, and confidence gave me the confidence that, no matter how scared i was of hurting him, this was my role… and i could do this. later, jo, the lactation consultant, showed me how to express my breastmilk. again, i was being shown, handheld, that i was an important person in my son’s life. the next day ben and i met the parent-infant interaction coordinator, cherry bond, who told us about positive touch and it all made sense. again, we felt well supported. noah’s nurses and the developmental care team showed us how to hold the feeding tube; how to change his nappy so that it didn’t cause him distress; how to hold his feet to give him positive experiences to lessen the pain of regular heel pricks; how to clean his mouth with expressed breastmilk; and how to massage his tummy. we were given leaflets about his development at different stages. between us—ben before and after work, and me a little later in the morning—we spent 12-14 hours a day in the unit with noah. we talked to him, read to him, sat quietly and watched him and, as he grew stronger, were able to hold him for skin-to-skin cuddles for longer and longer periods. i remember sitting there for three hours once, desperate to express my milk and go to the loo, but unwilling to give up this wonderful moment. when i wasn’t with noah or expressing milk i could take a break in the parent rooms next to the unit; this chance to have a relaxing change of environment made it easier to stay all day. family and friends visited—strictly observing hygiene and privacy of other babies—and this made us feel like noah truly was a part of us. i remember a nurse being asked how she could look after these four babies in the room on her own; she said that it was because the parents were always there and that they took care of all their infant’s needs. she’d taught us well and left us to parent our infant, while being a constant reassurance. as noah grew stronger, and came off his breathing support, ben gave him his first bath. he was shown how to wrap him and position him to make it a pleasant experience. the staff made this into a really special moment for us. at times, there were little hiccups along the way—the reflux, the blood transfusion, fears of infection—we were very lucky that noah was stable. my emotions leapt up and down. early on, the shock and exhaustion took over from the elation when pippa jones is the chief executive of the winnicott foundation whose aim is to provide support, equipment and training to medical staff, families and their infants who are currently living in the newborn intensive care nursery. pippa and her husband have two sons, noah and jonah. noah was born at 29 weeks and weighed 3.14 pounds. he spent eight weeks at st. mary’s hospital in london and is now doing great things with his friends at school. jonah is almost four years of age. he was born at 37 weeks, after a difficult pregnancy, but uncomplicated birth. he and his brother, noah, love to swim and play games together. they have taught both of their parents much about the joys of life! pippa shares her story of the birth of her sons and how developmental care made such an important contribution to the life of her sons and family.pipa jones with her sons jonah (left) and noah. fa m i ly v o i c e s tracy price-johnson, ma developmental observer • 2011 • 7 my hormones rushed in. leaving my baby in the hospital to go home every night was upsetting. seeing women who were heavily pregnant was hard. i fought to hold back the tears when tests or medical treatments were needed. new nurses, who didn’t know noah, sometimes took over his feeds or care without involving me. oftentimes this would leave me feeling helpless, until i found a way of letting these new nurses know that this wasn’t how it was done. i now know that individualized care is not the norm and that some nurses had to work to change their practice. after noah started feeding, again, supported by nurses and the lactation consultant, we roomed in for three nights next to the unit. this opportunity, to be on my own with my baby for the first time since he was born, seven and a half weeks earlier, was scary and magical. i felt ready to take him home. janice, the community nurse, came to visit us for a few weeks after our transition from the unit, for which we were very grateful. noah has a brother, jonah, who was delivered at 37 weeks, two years later. after jonah’s birth, by c-section, he began grunting and the doctors planned on sending him up to the nicu for observation if it continued. cherry bond, came to visit us and advised me to put him upright, skin-to-skin. he stopped grunting and we spent his first night together. this “normality” was a wonderful feeling. both of our children are incredible, bright, happy and healthy individuals. it is hard to know what effect noah’s experience had on him; although we may assume some, i feel that the individualized care helped to reduce this. maybe it has even given all of us qualities that we would not have had before. the winnicott baby unit is, like all nicus, a special place. named after donald winnicott, the pediatrician and psychoanalyst who said that “you can’t think of the baby without thinking of the mother.” he stressed the importance of the family rather than just focussing on the baby’s problems. developmental care was introduced in the unit by inga warren, a consultant occupational therapist who worked with the medical and nursing team to train and support them in individualized, family-centered care. inga is now a nidcap trainer and from my meetings with her as a parent, in and after leaving the unit, to working with her now, i have always been amazed by her insights. a year after noah was born i volunteered for a charity entitled “the winnicott foundation.” this charity provides additional funding and support to the winnicott baby unit at st. mary’s hospital. later i became the foundation’s chief executive. the charity was formed 25 years ago by doctors and parents who wanted to do more for babies and families; the trustees are still parents and doctors who combine their passion and experience with advice from nursing, medical and other newborn intensive care staff. supporting family-centered care is at the heart of the charity’s work. based near to the unit, my role as chief executive involves talking to staff and families, understanding their needs and fund-raising to provide the resources to meet those needs in line with the aims of the charity and the newborn intensive care unit. i attend parent support groups, as a parent, with the unit’s family liaison nurse and psychologist, as well as the weekly post-discharge infants and massage group that the charity funds. the charity aims to help parents to be with their infant… and be comfortable there. we provide funding for comfortable chairs, parent facilities, information for families, breast pumps for mothers to take home (to supplement those provided in the unit), and travel and accommodation costs. we also fund staff training and education and equipment. in 2006, the uk nidcap training center, based at st. mary’s and supported by the winnicott foundation, was established. the charity supports the practice of developmental care in the unit through funding st. mary’s staff to undergo their nidcap training and developmental care competencies as well as buying materials to support the care of infants and their families. we are also funding the cost of training another nidcap trainer to secure the future of the nidcap center. in my years in the unit, i have seen how each family and infant is different…everybody’s needs are different. i can see that strong teamwork, strong leadership, and good communication in a newborn intensive care unit supports an individualized, relationship-based approach to care that is offered to both infants and their families. i can also see that this, at times, can also be hard. as people walk along the busy london street, past st. mary’s hospital, as they come and go from paddington train station, most will have no idea of the type of incredible care that is happening through a window just above them. i feel privileged to be part of this world, to meet families who become part of it, to work with people who have made a difference to my family’s life, and who continue to make a difference in other families’ lives. pippa jones www.winnicott.org.uk from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@ nidcap.org. developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor sandra kosta, ba associate editor gretchen lawhon, rn, phd associate editor 8 • 2011 • developmental observer for this issue, i have chosen to profile josep perapoch, a neonatoloist at the vall d’hebron hospital in barcelona, which is the capital of catalonia, a county of spain. as nidcap spreads across europe, we are learning a lot about newborn care in many countries. josep shares insight into spain and how nidcap has become truly a focus for the advancement of newborn care. kaye spence (ks): josep, can you tell me about yourself and your work? josep perapoch (jp): i am a person who likes to keep in touch with nature, and being with my family (my wife and two teenagers) and friends. i also enjoy my job, supporting babies and their families to grow and develop. as a neonatologist, i am responsible for the care of preterm babies, from birth to follow-up, and therefore i am involved with the implementation of nidcap into the unit. ks: we hear a lot about newborn care in various european countries, can you tell me about newborn intensive care in spain? jp: in spain, there are more than 520,000 births annually. of these, about 87,000 are in catalonia, the main catchment area of our hospital. over the past 10 years, there has been a 56% increase in the number of births, with a small reduction in 2009, and we are expecting a decline in the coming years. the rate of prematurity is around 7.7% of births, with 0.8% of births weighing less than 1500 grams or less than 32 weeks gestation. across spain, there are more than 50 hospitals which provide care for infants less than 1,500 grams. the perinatal mortality rate is around 4.5%, and for premature babies of less than 1,500 grams, neonatal mortality is about 9-10%. in general, most preterm infants are discharged home around 36 weeks corrected gestational age. the smallest at birth and those who are suffering [lung disease] are the infants who have an extended hospital stay. ks: how big is your nicu and who makes up your newborn team? jp: the unit of vall d’hebron hospital is one of the largest in spain. it has 69 cots, twenty-five of which are intensive care. it is a level iiic unit attached to an obstetric and high-risk perinatal center. we have more than two hundred nurses and twenty-two neonatologists working in the service. the availability of social workers, psychologists and physiotherapists depend on central services, and are not always available to spend the time in the nicu that we would like. ks: this appears to be a very large unit with many staff. what models of care are you using in your nicu? jp: we are trying to introduce a new model based on relationships as part of nidcap. we are moving from a classic model which is essentially based on technology. until very recently, there were very few spanish units that allowed free entry of parents. we introduced a change three years ago and now parents are free to enter the unit. ks: can you tell me more about the work you do with families in your nicu? jp: currently, families are invited to participate in the care of their children 24 hours a day. we try to facilitate their stay with different initiatives. we have a room for parents to relax, prepare food, and talk. we also have rooms where parents can live with their children prior to discharge. for those families living near barcelona, a home care service facilitates early discharge from the unit. in addition, for immigrant parents, who represent more than 25% of admissions to our unit, a cultural mediation service provides not only translation but also mutual understanding from different cultural views. ks: it seems like you have numerous supports for families. can you tell me more about some of the changes that have occurred in your nicu? jp: parents now share the care of their children from the first moments of admission. recently psychologists have joined our newborn team, with the intention of helping parents as well as other health professionals. we try to take care of infants by preventing the excess of stress which we know they can not tolerate. we are also trying to support the individual needs of each infant through relationship-based developmental care while simultaneously providing the most sophisticated care and technology. ks: how are you incorporating developmental care and nidcap into this change? jp: we have started an ambitious training program in developmental care for all professionals. at the same time, we have begun to undertake weekly observations of all infants under 27 weeks and others who we feel are most vulnerable. these infants are detected through a triage system that takes into account both the infant’s biomedical and psychosocial characteristics. change is difficult for some professionals and sometimes there is an unwanted variability in care that can effect families. josep perapoch, md, phd n i d c a p p r o f i l e kaye spence, am, rn, rm, mn developmental observer • 2011 • 9 however, we are full of optimism and believe that this is a process that will continue in a forward motion. the conviction of the majority of professionals and the directions of the hospital are a major factor. ks: i think you have described some of the challenges we all face when we try to make changes. it is valuable to hear about the work of others involved in nidcap. when did you first become involved with nidcap? jp: i started my nidcap formal training five years ago, thanks to my good fortune in meeting graciela (grace) basso, md, phd. grace has been critical for the development of nidcap in our hospital and in spain. in addition to the professional bond, from the beginning, a great friendship unites us. before meeting grace, my understanding of nidcap was through meetings and conferences where i had heard of and met nikk conneman, md, bjorn westrup, md, phd, agneta kleberg, rn, phd, inga warren, dip cot, msc, jacques sizun, md, and especially through the work of heidelise als, phd. my evolution from a more technological form of neonatology was influenced by many factors such as my curiosity of perinatal results in the nordic countries; my experiences through the followup of infants and their families; and also the fact that my wife is a psychologist and the opportunity to discuss with her many of these aspects. in addition, a large part of this journey has been shared with a good friend and professional, dr. keka pallas. ks: this highlights for me the importance of having a good mentor. how is nidcap training being achieved in your unit now? jp: currently we have two certified nurses, besides myself, and a doctor who has completed the advanced practicum, and a total of twelve professionals who are in the training process. i am doing my apib training and am fortunate to be doing it with grace and heidi. there are many professionals in the hospital wanting to start their training. we plan to develop a nidcap training center, which is a big responsibility for all of us. ks: what do you think is the future for nidcap in spain? jp: the future, and present, is very good. spain has awakened late but forcefully. there are three hospitals with nidcap professionals: two hospitals in barcelona (vall d’hebron and sant joan de deu) and another hospital in madrid (hospital 12 de octubre). there is a lot of interest in starting nidcap training in many other hospitals. in parallel, there is great interest in developmental care in the majority of spanish newborn intensive care units. ks: what do you see as the most important aspect of providing best practice for preterm and sick newborns in spain? jp. one important aspect in providing best practice will be the value that nurses and also doctors, are giving to nidcap and developmental care. another aspect is the involvement of governments. they have begun to include it in their plans. the key point is that parents become caregivers of their children during admission. most spanish units are opening their doors to parents. this will definitely help to change the way to provide care for preterm and sick newborns. ks: thank you josep. many of us will benefit from your insights and the nidcap approach to newborn care. in the hallway one hallway two mothers two different realities one me i run into you in the hallway outside of the nicu you smiled, cell phone to your ear “he is better, he is much better, i am calling the family, i can finally breathe” i punch my arms to the sky with a silent shout then reach out to you, we hug tightly celebrating this victory i run into you in the hallway on the way to the nicu you try to smile, but your eyes are sad i ask, “how is he?” your shoulders slump, your lips tremble “he went backwards last night again, i thought he was doing better, then this….” i find no words, with tears cresting i reach out my arms, we hug tightly trying to comfort each other one hallway two mothers two different realities one me bess heliker, rnc, mn, feb 6, 2010 10 • 2011 • developmental observer melissa r. johnson, ph.d. s u p p o r t i n g fa m i l i e s a nicu parent support group using scrapbooking: the pages project many different strategies may enhance our support of parents; strategies that draw on family strengths and creativity are especially consistent with the nidcap approach to care. laurie mouradian, scd, otr/l, program director of the oklahoma infant transition program at children’s hospital in oklahoma city, ok, writes about a very successful activity that fits this description perfectly. the team describes not only the details of developing and running such a program, but also data demonstrating its effectiveness in reducing anxiety experienced by nicu parents. the pages (parents are great) project is a parent support group that uses scrapbooking as an activity to help parents navigate the experience of having a baby in a newborn intensive care unit (nicu). it is provided by staff of the oklahoma infant transition program (oitp) at children’s hospital in oklahoma city, ok. naturally, parents with a baby in the nicu worry about infant survival and possible long-term effects of prematurity. researchers2-4 have shown that additional stressors for parents during hospitalization include the infant’s appearance, sights and sounds in the unit, alterations in the parents’ roles and in their relationship with their infant. even three years after having a child in nicu, mothers recall vivid memories of the stress associated with the nicu experience.5 as a therapeutic activity, making scrapbook pages, which typically include a photograph and journaling about the photograph, may incorporate the potential stress reducing benefits of both photography and writing.6,7 therefore, to help parents with the experience of having a baby in the nicu, we developed a weekly parent support group using scrapbooking as an intervention to reduce parental stress. to test the benefits of this group we received a small grant from the department of pediatrics, neonatology section, to fund a research study. one afternoon a week, we held a two-hour session in the nicu education room. flyers were posted and also left in each care room to let parents know about the group. each week, we brought a cart with art supplies and rearranged the chairs and tables to create an inviting environment that included soft music in the background. all parents who came to the group were eligible to participate in the activity and parents 18 years or older, were offered study enrollment. parents who agreed to participate in the research portion of the program received a prepaid gift card at completion. to document the effects of group participation, we chose to measure state anxiety, which refers to anxiety “in the moment.” we used a self-report paper and pencil test, the state-trait anxiety inventory8 (stai) before and after the group experience. we also interviewed parents briefly after the group session about their experience. when a parent arrived, the research component was described and age eligibility (18-45 years) was determined. for parents who agreed to participate in the study, a consent form was reviewed and signed. those parents who did not bring a photograph signed an additional photograph consent form and then accompanied a staff member to take a picture of their baby. upon return, the parent was given the stai while waiting for the photograph to be printed. a staff member then reviewed the supplies provided, and showed samples that were available. additional suggestions and assistance were available at parent request. once a parent indicated they were finished with their page, the stai was administered again. for privacy, we stepped out of the room with the parent to conduct a brief closing interview and for distribution of the gift card. statistical analysis compared scores on the stai taken before making a scrapbook page to scores after making a scrapbook page. we enrolled three to four families per session for a total of 40 families who completed both the preand post-intervention tests completely. we found that state anxiety levels declined an average of 12.7 points as measured by the stai. statistically this was very significant (p<0.0001), clinically meaningful, and larger than we anticipated. qualitative analysis of the brief parent interview demonstrated that, from the parent’s perspective, participation appeared to support these findings. parents described the group as being relaxing, and as providing an element of distraction while reducing boredom. they also described that it gave them an opportunity for emotional support and reduced their sense of isolation. finally, it gave them an opportunity to do something meaningful for their infant. anecdotally, parents repeatedly report how relaxing the experience was and how much they appreciated being able to participate in this group. the study data collection phase concluded at the end of december, 2008. with the generous support of the children’s hospital volunteer auxiliary and numerous other individual donors, including nurses, doctors and family members, we have been able to continue offering a weekly scrapbook group for nicu families. from january, 2009 to may, 2010 we served over 500 additional nicu family members and look forward to continuing to offer this valuable service to families of newborns at children’s hospital. this program has been replicated in a chicago nicu and we would be happy to give input to anyone who would like to start a similar program in their nicu (please contact laurie-mouradian@ouhsc.edu). we would like to thank the families who participated in this study. we would also like to acknowledge beth degrace, phd, continued on page 14 developmental observer • 2011 • 11 c u r r e n t d e v e l o p m e n ta l r e s e a r c h jacques sizun, md and inga warren, dip cot, msc detecting the bias in randomized controlled trials: a healthy attitude to good scientific research evidence-based medicine (ebm) is defined as “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients,” 1 and also incorporates the patient’s values, including religious or moral beliefs, and patient autonomy. ebm is a way to evaluate and manage medical uncertainty. around the world, the drive to increase quality of care while reducing costs raises the demand for cost effective strategies and it will be argued that money is best spent on interventions with the highest level of evidence.2 the randomized controlled trial, the gold standard for ebm, offers a higher level of evidence than observational studies or non-randomized trials. critical analysis of trials includes the search for bias, which is the “tendency of an estimate to deviate in one direction from a true value” 3 and is “…not necessarily associated with a conscious or malicious attempt of investigators… more commonly unintentional, and often unrecognized even by the researchers themselves…” 3 therefore, searching for bias is an approach that helps clinicians to understand the limits of current trials and to imagine the next step for research. it is difficult to completely eliminate bias and it can take many forms; different types of study are subject to different forms of bias. we have highlighted some forms of bias that may be of particular interest when considering a nidcap study design. bias of recruitment bias of recruitment can occur if some potentially eligible individuals are selectively excluded or included in the study because the investigator knows the group to which they would be allocated if they participated; for instance, enrolling a patient with a better prognosis into the investigator’s preferred treatment. this bias could arise from the investigators’ subjective concerns about the risk of adverse effects.4 usually bias of recruitment is suspected if the method of allocation can help the investigator to predict future allocations based on knowledge of past allocations, for instance, using blocks of sealed envelopes. this bias is also suspected if the recruitment rate is low compared to the high number of eligible patients hospitalized in the research site. this bias can be reduced by “allocation concealment,” which is rarely reported in clinical trials.5 decentralized randomization by telephone or the internet are ideal methods for allocation concealment. ascertainment bias with this bias, the results of a trial are distorted by knowledge of which intervention each participant is receiving. this bias could occur if the main outcome is evaluated by an investigator who participated in the intervention or has access to the allocation data. the risk is important if the investigator belongs to the team in charge of the patient. the solution is to have examiners fully independent from the team and/or with two independent and blind evaluations of the outcome. contamination bias the contamination bias can occur when a patient from the control group inadvertently receives the intervention. this is crucial for nidcap trials when infants from the control and intervention groups are cared for in the same unit. in this case, there is a risk of masking a true positive impact of the intervention. one solution is to perform a cluster randomization. this means that instead of randomizing patients the trial will randomize units: “intervention units” and “control units”. unfortunately, this method needs a higher number of patients than a trial with patient randomization and exposes the trial to other forms of bias and difficulties with informed consent.6 moreover, in the case of nidcap, it will be necessary to train more units before sufficient numbers would be available for cluster randomization. complexity bias this bias is observed when a trial is used to study complex interventions needing the skills of health professionals that are not available in other settings. this does not affect the absolute value of the results, however, it may effect the generalization of the conclusions. when new techniques are introduced, the results are generally not as good as they are after a period of practice when the professionals delivering care have learned from experience. choice-of-question bias this bias occurs when a trial is designed to demonstrate a pre-required answer but not to answer the main question. for instance, as it could be complex to demonstrate the long-term positive impact of an intervention, it could be easier to measure the impact on a short-term outcome, such as the length of hospitalization. conclusion searching for bias is a scientific approach that helps to enrich medical discussion and to avoid emotional conflict. it is also an important exercise for students as part of their scientific training. the main recommendations for designing a future multi-site nidcap study are: » decentralization of randomization; » randomization by clusters; » blinding the evaluation by using at least two independent examiners; and » long term neurodevelopment as the main outcome. continued on page 14 12 • 2011 • developmental observer diane ballweg, msn, rnc, ccns d e v e l o p m e n ta l r e s o u r c e s articles bartick m & reinhold a. the burden of suboptimal breastfeeding in the united states: a pediatric cost analysis. pediatrics. 2010; 125(5): e1048-e1056. coker tr, rodriguez ma, & flores g. family-centered care for us children with special health care needs: who gets it and why? pediatrics. 2010; 125(6): 11591167. feldman r & silberstein d. looking at infants and learning from them: a review of the newborn as a person by nugent, petrauskas and brazelton. psyccritiques database. 2009; 54(36): article 4. www.apa.org. geangu e, benga o, stahl d, & striano t. contagious crying beyond the first days of life. infant behavior and development. 2010; 33: 279-288. holsti l & grunau r. considerations for using sucrose to reduce procedural pain in preterm infants. pediatrics. 2010; 125(5): 1042-1047. johnson b, ford d, abraham m. collaborating with patients and their families. journal of healthcare risk management. 2010; 29(4): 15-21. koldewijn k, van wassenaer a, wolf mj, meijssen d, houtzager b, beelan a, kok j, & nollet f. a neurobehavioral intervention and assessment program in very low birth weight infants: outcome at 24 months. journal of pediatrics. 2010; 156(3): 359-365. korosi a, shanabrough m, mcclelland s, liu zw, borok e, gao xb, horvath tl, & baram tz. early-life experience reduces excitation to stress-responsive hypothalamic neurons and reprograms the expression of corticotropin-releasing hormone. journal of neuroscience. 2010; 30(2): 703-713. korvenranta e, lehtonen l, rautava l, hakkinen u, andersson s, gissler m, hallman m, leipala j, peltola m, tammela o, & linna m. impact of very preterm birth on health care costs at five years of age. pediatrics. 2010; 125(5): e1109-e1114. kouzakova m, van baaren r, & van knippenberg a. lack of behavioral imitation in human interactions enhances salivary cortisol levels. hormones and behavior. 2010; 57: 421-426. kuiper r, pesut d, & kautz d. promoting the self-regulation of clinical reasoning skills in nursing students. the open nursing journal. 2009; 3: 76-85. mcanulty gb, duffy fh, butler sc, bernstein jh, zurakowski d, & als h. effects of the newborn individualized developmental care and assessment program (nidcap) at age 8 years: preliminary data. clinical pediatrics. 2010; 49(3): 258-270. mcanulty g, duffy fh, butler s, parad r, ringer s, zurakowski d, & als h. individualized developmental care for a large sample of very preterm infants: health, neurobehaviour and neurophysiology. acta paediatrica. 2009; 98(12): 1920-1926. nyqvist kh, anderson gc, bergman n, cattaneo a, charpak n, davanzo r, ewald u, ibe o, ludington-hoe s, mendoza s, pallas-allonso c, pelaez jg, sizun j, & widstrom am. towards universal kangaroo mother care: recommendations and report from the first european conference and seventh international workshop on kangaroo mother care. acta paediatrica. mar 6, 2010; epub ahead of print. nyqvist kh, anderson gc, bergman n, cattaneo a, charpak n, davanzo r, ewald u, ludington-hoe s, mendoza s, pallas-allonso c, pelaez jg, sizun j, & widstrom am. state of the art and recommendations – kangaroo mother care: application in a high-tech environment. acta paediatrica. mar 8, 2010; epub ahead of print. smith jr & donze a. assessing environmental readiness: first steps in developing an evidence-based practice implementation culture. journal of perinatal and neonatal nursing. 2010; 24(1): 61-71. solhaug m, bjork it, & sandtro hp. staff perception one year after implementation of the newborn individualized developmental care and assessment program (nidcap). journal of pediatric nursing. 2010; 25(2): 89-97. stephens be, liu j, lester b, lagasse l, shankaran s, bada h, bauer c, das a, & higgins r. neurobehavioral assessment predicts motor outcome in preterm infants. journal of pediatrics. 2010; 156(3): 366-371. strathearn l & mayes lc. cocaine addiction in mothers: potential effects on maternal care and infant development. annals of the new york academy of science. 2010; 1187: 172-183. sweeney jk, heriza cb, & blanchard y. neonatal physical therapy part i: clinical competencies and neonatal intensive care unit clinical training models. pediatric physical therapy. 2009; 21(4): 296-307. developmental observer • 2011 • 13 we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to diane ballweg at: developmentalobserver @nidcap.org. sweeney jk, heriza cb, & blanchard y. neonatal physical therapy part ii: practice frameworks and evidence-based practice guidelines. pediatric physical therapy. 2010; 22(1): 2-16. tomalski p & johnson mh. the effects of early adversity on the adult and developing brain. current opinion in psychiatry. mar 19, 2010; epub ahead of print. van sant af. neonatal therapy guidelines. pediatric physical therapy. 2009; 21(4): 295. wei l, david a, duman rs, anisman h, & kaffman a. early life stress increases anxiety-like behavior in balbc mice despite a compensatory increase in levels of postnatal maternal care. hormones and behavior. 2010; 57(4-5): 396-404. williams j & stickley t. empathy and nurse education. nurse education today. april 7, 2010; epub ahead of print. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. nidcap nursery certification program (nncp) the nidcap nursery certification program (nncp) under the auspices of the nidcap federation international (nfi) recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of the newborn individualized developmental care and assessment program (nidcap) for infants and their families. nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact nncp director at: nncpdirector@nidcap.org or 785-841-5440. 14 • 2011 • developmental observer n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d continued from page 5 s u p p o r t i n g fa m i l i e s continued from page 10 very much in demand in europe, thus part of the trainers’ time is spent training trainees in other european countries. more general developmental knowledge is spread through lecturing at international conferences on various topics, from nidcap to developmental implementation and teaching, as well as providing information on developmentally supportive architecture. the sophia nidcap training center also provides lectures and motivational support for teams from different national and international nicu’s. many european nurses and doctors have since spent time in our unit in rotterdam; visiting anywhere from a few weeks to an entire month. prior to their visit, each nurse/doctor submits a formal application and identifies the specific goals of their visit. to help them reach those goals we provide individualized support to these visitors. each visitor is paired with their professional counterpart. for example, our nurse manager will spend time with the visiting nurse manager and a visiting administrator is paired with our hospital’s administrator. in the netherlands, we have a very strong group of individuals invested in the training and implementation of the infant behavioral assessment and intervention program (ibaip©).1-4 the ibaip is based on the model of synactive organization of behavioral development5,6 and on the work and training of nidcap.7-10 it offers a continuum of neurobehavioral support for infants who receive care in the hospital from nidcap trained professionals. once the infant has been discharged home with his or her family, this neurobehavioral support is continued with the implementation of ibaip by early interventionists in the community. in june 2008, an ibaip training center was established in amsterdam at the academic medical center, university of amsterdam. the ibaip training center has recently been funded by dutch insurance companies to support ibaip implementation once the infant is discharged home. the amsterdam and rotterdam academic centers are very supportive of nidcap. we hope to prove that a solid, nidcapbased start in the hospital, complemented with ibaip implementation at home, will become the standard of dutch newborn intensive care and community early intervention services. references: 1. hedlund r. fostering positive social interactions between parents and infants. teaching exceptional children. 1989; 21(4): 45-48. 2. hedlund, r. outreach project helps ease transition of high-risk babies from hospital to home. outlook 1992. seattle, wa: university of washington health sciences center. 3. hedlund r. the infant behavioral assessment and intervention program (ibaip). 1998. www.ibiap.org. 4. koldewijn k, van wassenaer a, wolf mj, meijssen d, houtzager b, beelen a, kok j, nollet f. a neurobehavioral intervention and assessment program in very low birth weight infants: outcome at 24 months. the journal of pediatrics. 2010;156: 359-365. 5. als, h. the unfolding of behavioral organization in the face of biological violation. in ez tronick (ed.) social interchange in infancy: affect, cognition, and communication. 1982. baltimore: university press. 6. als, h. toward a synactive theory of development: promise for the assessment of infant individuality. infant mental health journal. 1982; 3: 229-243. 7. als h, lester bm, tronick e, brazelton, tb. manual for the assessment of preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw (eds.), theory and research in behavioral pediatrics, vol. i. 1982: 64-133. new york: plenum. 8. als, h. manual for the naturalistic observation of newborn behavior (preterm and fullterm infants).1986, 2000. ©nidcap federation international, 2010. www.nidcap.org 9. als, h. a synactive model of neonatal behavioral organization: framework for the assessment and support of the neurobehavioral development of the premature infant and his parents in the environment of the neonatal intensive care unit. physical & occupational therapy in pediatrics. 1986; 6(3/4): 3-55. 10. als, h. earliest intervention for preterm infants in the newborn intensive care unit. in m. j. guralnick (ed.), the effectiveness of early intervention. 1997: 47-76. baltimore: paul brooks. otr/l and dave thompson, phd who assisted with the design and analysis of the research component. special thanks is also offered to oitp staff, april courouleau, msw, kathleen gray, bsw, wanda felty and paige mills, who help to staff the group each week. the oklahoma infant transition program (oitp) and sooner nidcap training center are part of the neonatology section, department of pediatrics at the university of oklahoma health sciences center, oklahoma city, ok. funding for oitp and the sooner nidcap training center is provided by the oklahoma department of human services (dhs), division of family support services, health related and medical services (children with special health care needs) from the federal title v maternal and child health block grant. references: 1. pederson dr, bento s, chance gw, evans b, fox am. maternal emotional responses to preterm birth. american journal of orthopsychiatry. 1987; 1: 15-21. 2. bass l. what do parents need when their infant is a patient in the nicu? neonatal network. 1991; 10, 4: 25-32. 3. miles ms, funk sg, kasper ma. the neonatal intensive care unit environment: sources of stress for parents. aacn clinical issues in critical nursing. 2004; 2, 2: 346-354. 4. dudek-shriber, l. parent stress in the neonatal intensive care unit and the influence of parent and infant characteristics. the american journal of occupational therapy, 1991; 58, 5: 509-520. 5. wereszczak j, miles ms, holditch-davis d. maternal recall of the neonatal intensive care unit. neonatal network. 1997; 16, 4: 33-40. 6. macnab aj, beckett ly, park cc, sheckter l. journal writing as a social support of parents of premature infants: a pilot study. patient education and counseling. 1998; 33: 149-159. 7. huckabay lmd. the effect on bonding behavior of giving a mother her premature baby’s picture. scholarly inquiry for nursing practice. 1987; 1, 2: 115-129. 8. spielberger cd. manual for the state-trait anxiety inventory (form v). 1983. palo alto ca: consulting psychologists press. submitted by laurie mouradian, scd, otr/l references 1. sackett dl, rosenberg wm, gray ja, haynes rb, richardson ws. evidence based medicine: what it is and what it isn’t. british medical journal.1996; 312: 71-2. 2. jadad ar & enkin m. randomized controlled trials: questions, answers, and musings. 2007. blackwell publishing 3. sachdeva rc, jain s. making the case to improve quality and reduce costs in pediatric health care. pediatric clinics of north america. 2009; 56: 731-744. 4. amiel p, moreau d, vincent-genod c, alberti c, hankard r, ravaud p, gottot s, gaultier c. noninvitation of eligible individuals to participate in pediatric studies: a qualitative study. archives of pediatric and adolescent medicine. 2007; 161(5):446-50. 5. pildal j, hróbjartsson a, jørgensen kj, hilden j, altman dg, gøtzsche pc. impact of allocation concealment on conclusions drawn from meta-analyses of randomized trials. international journal of epidemiology. 2007; 36(4):847-57. 6. donner a, klar n. pitfalls of and controversies in cluster randomization trials. american journal of public health. 2004; 94(3):416-22. c u r r e n t d e v e l o p m e n ta l r e s e a r c h continued from page 11 developmental observer • 2011 • 15 compared to with what we ought to be we are only half awake. our fires are dampened, our drafts are checked. we are making use of only a small part of our physical and mental resources. stating the thing broadly, the human individual lives far within its limits.william james (january 11, 1842 – august 26, 1910). j ean baptiste pierre antoine de monet, chevalier de lamarck, or simply lamarck, was born in france on august 1, 1744, and died in poverty on december 28, 1829. he was one of the first evolutionists and is best known for his theory of inheritance of acquired characteristics. 1 this theory proposes that an organism, forced by environmental pressures to change in order to adapt, will pass such changes on to its offspring. lamarck believed for example that elephants had to stretch their trunks to reach deepwater sources and high branches, and thus their offspring inherited long trunks. charles robert darwin (1809 – 1882) an english naturalist thought very highly of lamarck, and built on his theory. he established that all species have descended over time from common ancestors, and that this branching pattern of evolution resulted from a process he called natural selection, which he published in his 1859 book on the origin of the species by means of natural selection. 2 darwin’s thinking largely prevails today. trofim denisovich lysenko (18981976) a russian biologist, although much later than darwin, tried to reverse darwinism by going back to lamarck and taking lamarck’s theory to the extreme. he argued for exclusively environmentally acquired inheritance, and attempted to discredit any genetic influence. 3 in recent years it has become increasingly apparent that the dichotomy of genetic versus acquired inheritance is not only unnecessary but incorrect. the field of epigenetics has begun to identify that both darwin and lamarck are correct and that phylogenetic and ontogenetic variability are the product of natural selection on the basis of genetics and of acquired traits. a whole new vista has opened. why would this column concern itself with such basic biological processes? i would like to draw all nidcap professionals’ attention to the emerging field of epigenetics which is potentially relevant for the understanding of processes underlying the effectiveness of nidcap, and likely will increase the urgency with which nidcap will become the care in all nicu settings. at its most basic, epigenetics is the study of changes in gene activity that do not involve alterations to the genetic code yet, 2011 vol. 4 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international message from the nfi president lamarck, darwin and the science of nidcap: epigenetics in the nicu “in the long history of humankind (and animal kind, too) those who learned to collaborate and improvise most effectively have prevailed.” charles darwin (1809-1882) continued on page 2 table of contentsmessage from the president ......... 1 nidcap training centers from around the world ...................................... 5 family voices ............................................. 6 nidcap profile .......................................... 8 supporting families ................................ 10 current developmental research ........ 11 developmental resources .................... 12 developmental observer nidcap federation international board of directors and staff the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens.harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu silke mader founder, european foundation for the care of newborn infants email: silke.mader@efcni.org roger sheldon, md, mph emeritus professor of pediatrics university of oklahoma email: roger-sheldon@ouhsc.edu jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr karen smith, rnc, med nidcap senior trainer co-director, st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu victoria youcha, edd child development specialist children’s medical associates email: vyoucha@gmail.com rodd hedlund, med director nidcap nursery certification program email: nncpdirector@nidcap.org nidcap federation international (nfi) www.nidcap.org national nidcap training center children’s hospital boston and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: browne.joy@tchden.org st. luke’s nidcap training center st. luke’s regional medical center boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email:smithk@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey, usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se connecticut children’s nidcap training center connecticut children’s hartford, connecticut, usa co-director: ann milanese, md co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk university of illinois medical center at chicago nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contacts: tammy casper msn, med, rn or linda lacina, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org/membership.aspx, or email us at nfimembership@nidcap.org by order of establishment n i d c a p t r a i n i n g c e n t e r s 20 • 2021 • developmental observer julia giesen, nidcap professional edmonton, canada p o e t ' s c o r n e r today i tried something new to change my usual point of view from seeing through the baby’s eyes to focus on what i could surmise for tips and tricks i could relay to nurses to improve their day what could i glean from what i feel this little one tries to reveal what kind of help does he need how can i teach a nurse to read his cues and signs of hanging on keeping it together, then moving on slipping down, losing touch when all of it becomes too much when breathing pauses get drawn out and he has nothing left to shout that he really needs our help but has no energy to yelp how can we leave him at his best so he can breathe and get some rest moving softly into sleep that is robust, healing and deep so that when he does awaken energy is not from him taken to open his eyes and turn his head and look up out of his bed and meet the eyes he’s coming to know will be there always to watch him grow —julia giesen “what can i say?” doi: 10.14434/do.v14i1.31819 hello again from edmonton! julia giesen here with a second reflection to share from my nidcap training. this poem is from an observation in july 2019, this time on a little boy named benson. benson was born at 30 weeks and was six days old. for this observation my trainer asked me to think about what i would like to communicate to the nurse looking after him in the nicu. i watched as little benson paused in his breathing for longer and longer, dropping off to become unavailable. i recalled my nidcap trainer saying one goal of every newborn is to interact with his or her caregivers. i had so many questions running through my head. 22 • 2020 • developmental observer bodies of knowledge, like ‘flesh-and-bone’ bodies, work best when they are in balance. today, many bodies of biomedical knowledge are out of balance. for example, the body of knowledge comprising mechanisms of pain and pleasure is large and detailed on the side of pain mechanisms, but knowledge about how pleasure works is sparse and incomplete. similarly, we study depression more than happiness. in all, we know much more about processes of sickness than of health. there is a pervasive lack of balance! biomedical knowledge has distinctly practical, “applied” importance. this kind of knowledge is created, tested, translated, vetted and then sent off to work in hospitals, clinics and other healthcare settings. on its way to the hospital, imbalances appear. why are bodies of knowledge so lopsided? behavioral epigenetics, a field that is nicely introduced by the review article, “implications of epigenetics and stress regulation on research and developmental care of preterm infants“ (montriosso & provenzi, 2015) provides some insight into the way we define our areas of study and how this shapes our questions and hence the subsequent shape of our bodies of knowledge. it’s a fine paper, worth reading and understanding. behavioral epigenetics recently burst onto the science scene as a major disrupter. it’s great to shake things up, and epigenetics does it by challenging the “conventional wisdom” about the relations between genotype and behavior. in the process, epigenetics is re-writing basic rules of inheritance, by making obsolete phrases such as “genetic programs”, or “there are genes for . . .”, or “it’s in their dna to . . .”. the way that epigenetics forces a change in our vocabulary and thinking is that it reveals mechanisms whereby gene expression changes, without the actual genome changing! this is accomplished, as the authors explain, via molecular mechanisms that act “above” the genome (hence epi-genetic). several such mechanisms are now known. one of the most commonly studied epigenetic mechanisms is methylation, a process that “silences” gene expression at specific sites, usually within regulatory regions of gene where a methyl group essentially grabs onto a site and prevents dna → rna transcription. in contrast, histone modification is a molecular mechanism that promotes gene expression. histone modification involves an acetyl group acting to unwrap a histone (protein) “tail” in a way that exposes dna to transcription factors and thus facilitates gene expression. again, montriosso and provenzi do an admirable job describing and illustrating some of these molecular events that comprise the epigenetic “marks” that can be assayed after various laboratory manipulations of an animal or life events in humans. noted in the target article is a well-known example of epigenetic change. the research originated in the mcgill university laboratory of michael meaney, where he and a group of associates analyzed different styles of maternal behavior in rats. some mother rats (also called “dams”) spent lots of time licking and cuddling their infants whereas others reared healthy babies but provided much less licking and cuddling. although equivalent in growth and viability, the offspring of the attentive dams grew up to modulate their stress reactions and display resilient recovery from stress far faster than the offspring of the inattentive dams. when they became mothers, the female offspring of the two types of rat dams (attentive and inattentive) displayed similar styles of mothering. mothering style and its effects on offspring had been “inherited”. shocking to some, however, were the results of cross-fostering experiments: when attentive moms reared the babies of inattentive moms, those offspring showed the calmer, stress resilient demeanor whereas offspring of attentive dams reared by inattentive mothers developed into stressedout, poorly regulated rats. moreover, when these females became mothers, their mothering style was that of the foster dam, not the biological mother! yes, mothering style was “inherited” across the generations, but not via the mother’s genes (see champagne & curley, 2009; meaney, 2001). it was possible to examine neurons in various brain regions of the offspring reared by dams with the distinctly different mothering styles. one dramatic difference was the density of glucocorticoid receptors (grs) on the neurons in the hippocampus, a brain structure associated with emotion and learning. the studies surrounding this finding indicate that mothering styles by the rats primed the stress responses (described in the target article in terms of the hypothalamic-pituitary-adrenal or hpa activity) of the infants. the baby’s stress responses to the maternal environment, whether from the biological or the foster mom, altered the gr density on the hippocampal neurons and, as a result, altered responses to their own stress hormones. the researchers have found increased methylation at the sites responsible for gr production, pointing the way to the epigenetic shaping of the offspring’s brain. there are now studies in humans showing results compatible with this rat research. for instance, lester et. al. (2018) studied healthy, 5-month-old, term infants and their mothers, who either did or did not breastfeed exclusively to the time target article: montirosso, r. and provenzi, l. (2015) implications of epigenetics and stress regulation on research and developmental care of preterm infants. jognn, 44, 174-182. doi: 10.11 11/1552-6909.12559 a funny thing happened on the way to the hospital jeffrey r. alberts indiana university, nfi science committee, associate editor for science developmental observer • 2019 • 22 t h e s c i e n c e d e s k doi: 10.14434/do.v13i1.29094 developmental observer • 2020 • 23 of the experiment. they hypothesized that the breastfeeding relationship would serve as a maternal behavior difference to parallel the two groups dams used in the rat research. lester’s group staged a slightly challenging mother-infant interaction (a “still face” test) and measured the babies’ stress reactivity via salivary cortisol. they also measured dna methylation in the gr gene region of the babies’ dna from cheek swabs. breastfeeding by the human babies was associated with lower dna methylation and decreased cortisol reactivity. the results provided a striking replica of the rodent studies! there’s another stunning aspect of epigenesis: epigenetic changes can be inherited! epigenetic effects are shown to be associated with specific physiological or behavioral traits, typically caused by different types of experience within a lifetime, and then the same epigenetic marks are inherited from the adult via the dna in the gametes, so that the epigenetic changes are passed to their next generation. but the dna content of the cells has not been modified. this is transgenerational inheritance with no genetic change! it’s a new view of inheritance. it is a privilege to write a commentary about a new area of knowledge creation. hopefully, i’ve conveyed a sense of excitement about epigenetics and inspired you to read the montriosso and provenzi paper, and maybe more on the topic. nevertheless, i’ve also lamented an imbalance in biomedical knowledge. i argued that there has developed a culture that emphasizes studying sickness more than understanding health. this imbalance is perpetuating because each preliminary discovery leads to related questions which favors more and deeper questions about sickness and not about health. the field of behavioral epigenetics is nascent and just taking shape. already, the weight of the evidence-based knowledge is accumulating on the side of toxic stress, effects of poor parenting, bad diet, and other negative factors and forces. framing the issues this way naturally leads us to seek ways to prevent or undo harm. yes, there is merit to this, but i believe there is more to promoting health than blocking or remediating damage. there are paths to travel, on which we can acquire knowledge that can deepen our ability to guide, facilitate and maintain healthy development. many of these paths course through nicus. imagine bodies of knowledge growing and developing on their way to being implemented in the hospital. what if we not only understood how surges of adrenal hormones in combination with painful stimuli silence genes that are part of diminished stress reactions, but we also mapped the epigenetic marks of resilience to adversity, or we could reveal the ways in which nidcap facilitates histone modifications associated with a premie’s ability to self-regulate? what if we discovered that processes labelled as remedial or protective are identical to formative accretions in normal development? we might discover that a funny thing happened on the way to the hospital: we shifted emphasis and we lost sight of healthcare and instead saw mainly sickcare. perhaps we can use behavioral epigenetics as a field with new pathways, ones that balance studies of health and disease. indeed, there are instances and insights into the basis of healthful development. these appear in some studies of mother’s milk and the development of immune competence, we see examples across the landscape of microbiome research, and in some studies of oxytocin and related neuropeptides in development. the promotion of “nurture science” (bergman et al., 2019) is encouraging. indeed, about a decade ago, professor heidelise als wrote an instructive and insightful article in the developmental observer (als, 2011), in which she foresaw the important promise and implications of epigenetics on nidcap. i recommend reading montriosso and provenzi (2015) along with als (2011). to continue your education, go on to read the remarkable and beautifully crafted book by david s. moore (2015) on behavioral epigenetics. references 1. als, h. (2011) lamark, darwin and the science of nidcap: epigenetics in the nicu. developmental observer, 4 (2), 1-4. 2. bergman, n.j., ludwig, r.j., westrup, b. welch, m.g. (2019) nurturescience versus neuroscience: a case for rethinking perinatal mother-infant behaviors and relationship. birth defects research. 1-18. https://doi.org/10.1002/bdr2.1529 3. champagne, f. a., & curley, j. p. (2009). epigenetic mechanisms mediating the long-term effects of maternal care on development. neuroscience and biobehavioral reviews, 33(4), 593–600. doi: 10.1016/j.neubiorev.2007.10.009 4. lester, b.m., conrad, e., lagasse, l.l., tronick, e.z., padbury, j.r., marsit, c.j. (2018) epigenetic programming by maternal behavior in the human infant. pediatrics, 142(4), e20171890 5. meaney, m.j. (2001) maternal care, gene expression, and the transmission of individual differences in stress reactivity across generations. annual review of neuroscience, 24, 1161-1192. 6. moore, d.s. (2015) the developing genome: an introduction to behavioral epigenetics. oxford university press. https://www.amazon.com/developing-genome-introduction behavioral-epigenetics/ 23 • 2019 • developmental observer nidcap care in the moment u se d w ith p er m is si on sibling care developmental observer • 2019 • 11 during my pediatric specialty training (1975-80), i was already preoccupied by the mother infant separation in the children’s wards and in the newborn intensive care unit. at that time, fetal medicine was developing very fast and i started a very close collaboration with the obstetricians/midwives where i was working at the university hospital. our first approach to studying the behaviour of the preterm infant was to compare their intra-uterine behavior observed by ultrasound (eye movements, general movements, respiration, etc.) with sleep-wake cycles after birth by polysomnography. this was my first understanding of ontogeny of sleep in the 1980’s. in the 1980’s it was not yet understood that the proximity of mothers and babies had implications beyond the technical aspects. there were two approaches in those days: on the one hand the development of perinatal centers to keep high risk pregnancies in the proximity of well-equipped nicus. on the other hand, many pediatricians were fighting for children’s hospitals centralising pediatric expertise, especially for artificial ventilation. i tried very hard to convince the hospital authorities that sick newborns in the obstetric department needed to have building plans that included access to a nicu next to the delivery room. it took them 20 years to come to that idea on their own. i left in 1985 and moved to saint-pierre university hospital where there was no plan to move the nicu away from the delivery room. from the beginning, i shared with the vast majority of the nursing staff the need to move away from traditions like visiting hours for parents, lack of attention to pain during procedures, uncomfortable positioning and/or no respect of sleep cycles. in the late 1980’s and 1990’s, we initiated skin to skin, positioned the babies in hammocks, tried to reduce painful procedures by suppressing routine blood sampling and allowed permanent parental presence. all these approaches were quite innovative at the time. when i supported the practice of permanent parental presence, i was called by the head of the department of pediatrics asking me to stop, because he did not want it to happen in all the wards. i told him that these were the new official recommendations of the scientific societies of neonatology. that was of course not true. i bluffed and it worked! the suffering of the mother having a baby in the nicu appeared so deep to me that i started a collaboration with the psychiatrists and psychologist to have a professional vision for parental mental health support in the nicu. i also had the idea of not only diminishing pain and stress but including some policies that related to promotion of “well-being”. we started a study having babies listening to music or mother’s voice and recorded the reactions on video and observation sheets. unfortunately, because of lack of staff we could not conduct the study that would have provided relevant conclusions and publications, but we had observed that each baby had his individual pattern of response to that auditory stimulus. during those days, i realized that i had to contribute to neonatal research in a traditional way in order to insure the credibility of the unit and of the novel approaches to nicu care. my papers on nutrition and surfactant were published and i was a member of numerous scientific societies which contributed to the realization that our research was credible and necessary. simultaneously, pushed forward by jacques sizun from brest, a european group “the early developmental care network “contributed to the general sensitivities and need for culture change in the european units (see article developmental observer, vol. 3, no. 2, 2009). through this group’s efforts we conducted and nidcap profile dominque haumont phd introduction by joy browne, phd dominique haumont has been a trendsetter and a visionary when individualized, developmental care was not typical in most belgian newborn intensive care units (nicu), or for that matter, in many nicus world-wide. i have watched in amazement at how she has uniquely and sensitively brought about changes in her own hospital, in her country and in international settings. the vision of making sure babies and their mothers are never separated, her original goal, reflects an inspiration and has now been realized through her efforts over the last three decades. her novel and progressive approaches to making system change happen have been not only effective, but have given us a template for what can be achieved. they are reflective of our collective knowledge that change does not happen fast, but with perseverance and sensitivity it can be accomplished. we have much to learn from her stories of accomplishments, her perseverance and her ability to think “outside the box”. she is an enabler, a visionary and a true friend. thank you, dominique, for sharing the story of your journey with us. dominique haumont: her story of system change and implementation 12 • 2019 • developmental observer published several surveys about practices in nicus in europe. being interested in the assessment of babies’ behaviour i found a publication from björn westrup in 1997 where he described what happened in his unit in falun. he had returned from the united states (us) and introduced nidcap in europe. this approach appeared to me to be the one we needed to structure teaching of developmental care. from the beginning of implementing the newborn individualized developmental care and assessment program (nidcap) work, i wanted our unit to become a training center. it seemed the most efficient way to assure the consistency of the change we aimed for in the newborn units. my role in supporting nidcap was first finding the funding, explaining to the staff about the need for sensitive developmental care, and also explaining in national conferences why we had to change. since the beginning of the nidcap journey, i have put enormous efforts into finding the necessary funding for sending collaborators to the us, hosting nidcap and apib trainers in brussels and achieving the steps for becoming a nidcap training center. two major personal grant applications (in 1999 and 2002) gave me the necessary financial support to start building the brussels training center. as head of the neonatal unit, and also having national and international commitments i could not enter the training process myself, but i had been the translator (french-english) for many observations of the trainees. this provided me the opportunity to infuse nidcap approaches on a daily basis by integrating the new vision in organizing the care and encouraging consideration of parents to be collaborators with staff. we had all kinds of working groups among which early developmental care with a weekly discussion around specific aspects of implementing nidcap in the unit. delphine druart engaged herself in the process and appeared to have the qualities of an exceptional trainer. she consistently worked toward and was successful at becoming a nidcap professional and then a nidcap trainer. once the training center was opened, we wanted the unit to be an example to other belgian units. despite delphine being called for training in many other nicus in belgium and france, she insured and verified our level of nidcap care on a regular basis. i must say, the whole staff was very supportive of our efforts, including the obstetricians. due to the context of the different university nicus in brussels, i started with a small unit and was very close to the families. my resulting partnerships with parents have been very intense. together we created an association “neonid” to promote nidcap and familycentered care. i have been very lucky to work with neonatologists to whom i delegated the tasks in the caregiving; one of the reasons they worked in saint pierre hospital was because of the innovative approach of family-centered care. our unit and the staff grew and the unit ended up being the biggest in brussels. i became the conductor of the whole team. while we were building our training center, we experienced growing interest inside belgium and europe towards early developmental care, whether it was nidcap or something different. the variety of approaches aimed to provide proximity between families and include other elements of early developmental care. having started the movement of these approaches concretely in the nicu, i was invited to talk about our experience in many hospitals or meetings. often many visitors came to see how we had implemented our caregiving approaches. in belgium, the ministry of health appointed, by law, “colleges of physicians” to insure quality control. being a member and then the president of the college of neonatology (20082013), i had close contact with the ministry’s administration. i knew they were implementing incentives to increase breastfeeding rates by supporting the baby friendly hospital initiative (bfhi), and that mother infant closeness was accepted as being an important issue. i went several times to see our authorities where i presented the evidence for moving away from potential harmful traditional nicu environments. they understood the need for a structured tool to achieve our goals toward family centered care and agreed that the program which was the most evaluated was the nidcap approach. we obtained a four year contract (2006-2010) between the hospital and the ministry to increase the staff. once the training center was opened, other hospitals could apply for and obtain financial support to benefit from our teaching. they could combine bfhi and/or nidcap. it took roughly from 1985 to 2010 (25 years) to reach maturity of the concept. the proximity of the parents with their infant is the key issue, and without appropriate environmental supports and policies it is very difficult to apply. we started, like everywhere else, with common (often crowded) rooms and the very first fight was to obtain space for a comfortable chair for kangaroo mother care. when the nicu had to be rebuilt, the hospital directors decided to send me and some nicu parents to one of the florida conferences about nicu design which dr. joy browne was co-organizing. the newly built nicu opened in 2005. with the new design we could host mothers on a small bed in the single rooms. at that time it was quite progressive, but i already started to prepare the next step which was the concept of “couplet care” with a big family room. this process is still ongoing, but since it started, i have retired. initiating that extent of change in the nicu was not an easy task and it was very challenging. the most important chalinitiating that extent of change in the nicu was not an easy task and it was very challenging. the most important challenge to me was to be sure i was going the right direction. developmental observer • 2019 • 13 lenge to me was to be sure i was going the right direction. in the masculine world of scientific societies the issues on developmental care were not very popular. it was considered important for nurses or for emotional issues of parents but not really science. having understood that about my profession, i presented to my colleagues the impact of the different elements of edc and nidcap separately. there is scientific interest for pain, for colostrum, for effect of light and noise, for later outcomes and so forth. presenting the work in that way has proven to gain more interest. however, i still think that we cannot study nidcap easily because the sophisticated level of implementation and priorities of the program are difficult to measure. the other challenges i faced were comparable to “normal” challenges of the head of a department. as head, i continually faced personal and relationship issues within the staff. a nicu has very difficult periods when facing death, malformations, impairment, etc. it is very important to take care of emotions or feelings of patients, but the staff need special attention too, and sometimes psychological support. introducing nidcap provided positive returns from the team and i felt happy to have a happy staff most of the time. i have so many good memories of my life as head of the nicu in saint-pierre. the teamwork to provide a different way of caring is probably what made me most happy. initiatives taken by staff members and parents feeling at home are a few examples of what made me feel good. the situation has evolved, so many things which were “avantgarde” have become routine. with the foundation that i have described, the future of the training center in brussels now relies on the new team directing the unit. they will decide what they want at local, national and international level. they have the skills. personally, i am now running an international network enewborn, registering data on very low birth weight infants. i again want to move away from the traditional approach of looking at data. for instance, i think parents could, on a voluntary basis, provide information using special apps. prem (patient reported experience measure) and prom (patient reported outcome measure) could be a next step telling us how families see things. — dominique haumont brussels, may 28, 2019 i still think that we cannot study nidcap easily because the sophisticated level of implementation and priorities of the program are difficult to measure. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 20 • 2022 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e doi:10.14434/do.v15i2.34368 french nidcap center, brest the university hospital of brest is in the brittany region of france, in the westernmost department of the finistère. there are approximately 2200 births each year in the maternity department, which is the only level 3 maternity department that can receive children and newborns needing critical care including extremely preterm infants. the neonatal and pediatric intensive care unit of brest has 12 beds open to children from 0 to 15 years of age with medical or surgical needs. a large majority of admissions are premature newborns. approximately 400 newborns are admitted each year in our different units, including about 100 very preterm babies born between 24 and 32 weeks gestational age. our intermediate and special care nursery has a capacity of 18 beds divided into two sections. six intensive care beds and twelve intermediate care beds. since 2007, six intermediate care beds have been relocated to the maternity unit. when the nursery was established, we named it ‘koala unit’ as it is not a true ‘kangaroo care’ service. indeed, even if the parents are close to their baby, they do not perform skin-to-skin contact 24 hours a day. the road to nidcap the arrival of nidcap in brest was a process and great collective adventure. in the 1990s due to advances in perinatal medicine, the mortality of preterm infants, especially those with a gestational age of less than 30 weeks, decreased significantly. these infants were hospitalized for several weeks in the nicu. during this hospitalization, preterm infants were cared for in an inadequate environment for the harmonious development of the brain – sudden separation from their parents, noise, pain, unusual positions, frequent handling, and early, excessive, and often inappropriate stimulation. we were faced with increasingly important problems, for which we did not have satisfactory solutions that were applicable to all infants. infants were uncomfortable, and sometimes stressed and in pain. pain was diagnosed on the basis of the infant’s behavior, and it was often difficult to determine its severity and differentiate it from stress. respiratory morbidities, such as bronchopulmonary dysplasia leading to prolonged ventilatory support, were difficult for the infant, their family, and for caregivers. increasingly, frequent questions arose within the medical and paramedical team about the medium and long-term future of these very premature infants. what would be the impact of this nidcap brest team sylvie minguy (rn nidcap trainer brest france) nidcap trainer 2022 • developmental observer • 21 environment on the developing brain? what would be their achievements and at what pace? what were their chances of getting into school? their psychological future? their behavior in everyday life? families were present in the nicu more often but were finding it difficult to know their infant. the hospital pediatricians or private doctors who followed these former premature babies reported to the hospital teams that the parents absolutely did not know their infant upon discharge from neonatology and intensive care. it was as if the parents had never been involved in the care and development of their baby during hospitalization. various programs were set up at that time within the hospital and the intensive care unit to improve the care of babies and their families. skin-to-skin techniques were used, even for the mechanically ventilated children. in 1993, a study on noise, conducted by nurses, led to a change in practice that reduced the noise level in the neonatal unit. between 1993 and 1998, instructions for additional examinations, in particular biological examinations, fell by 70% in the neonatology unit. this process of change led to a reduction in orders of systematic, painful, and non-essential examinations, all accomplished without compromising the safety of the infant. in 1997, there was a lot of work done on pain within the entire pediatric department of the hospital. no invasive procedure such as intubation, placement of a chest tube, placement of a catheter was performed without analgesic cover. unfortunately, this coverage was not always completely effective. between 1996 and 1998, 80% of the department’s nursing staff benefited from training in the sensory awakening of full-term newborns and in massage techniques. the caregivers thought they could relieve the infants with massages but quickly realized that some infants did not tolerate massage at all. parents were increasingly present in the service. they were admitted to the units, but they were excluded at certain times, during rounds, whether medical or nursing, and especially during care. they remained mere visitors. it was difficult for families to find their place with their infants due to a lack of autonomy, but also due to a lack of privacy. parent/infant contact was difficult and only possible when the caregiver wanted it. the siblings or the grandparents could visit the baby only when the infant had stayed in the unit for a long time. developmental care techniques were used only after medical stabilization of the infant. there were different attitudes between different caregivers and between different units. the arrival of nidcap all these reflections and the desire to change our practices fostered the implementation of nidcap. it appeared to us that rather than focusing and acting on an isolated environmental factor, a more global modification of the structures and organization of care was necessary. we were missing the overarching theme which was determined ultimately thanks to an internet search carried out by dr jacques sizun in 1996. one night while on call, he read the word ‘nidcap’ for the first time and it suddenly seemed obvious to him: ‘if it exists, that’s really what we need!’ from that night on everything moved very quickly. we needed to inform the teams, find funding, convince the hospital directors, find a trainer in the united states. dr jacques sizun, dr nathalie ratynski and the nursing staff director at the time, ms catherine mambrini, flew to denver, colorado to participate in a nidcap training session conducted by dr joy browne. they returned to brest a few days later with a new perspective on the infants in the unit. several meetings later, five nurses came to support the team. in just over two years, thanks to joy’s guidance, these seven professionals became nidcap certified (five nurses and two physicians). jacques thought that the work stopped there, in reality it was only beginning. ‘the child and his parents are at the center of care. caregivers gravitate around.’ now that the theory had been absorbed and understood by the core team in the unit, it was time to disseminate the program across the services and influence change within the system without being too “pushy”! little by little the premises, the realization and the organization of the care, the relationships with the infants, with the parents, and between professionals had effected a real paradigm shift and inspired the establishment of a new philosophy of care: quickly, the demand for the formation of new nidcap training centers appeared. the french nidcap center, brest opened in 2004 directed by dr jacques sizun and co-directed “we were missing the overarching theme which was determined ultimately thanks to an internet search carried out by dr jacques sizun in 1996. one night while on call, he read the word ‘nidcap’ for the first time and it suddenly seemed obvious to him: ‘if it exists, that’s really what we need!’” 22 • 2022 • developmental observer by dr nathalie ratynski, who became the first french nidcap trainer. observations in the unit were conducted mainly by nathalie and periodically by other trained nurses. in 2005, a nurse coordinator position in developmental care was created. from then on, all infants born before 33 weeks and their parents were able to benefit from individualized nidcap monitoring. this position makes it possible to maintain cohesion between the numerous services, but also to establish links with external services specializing in the care of vulnerable infants. that same year, dr heidelise als spent a few days in brest to officially inaugurate the first french training center. outstanding! the program continued to promote nidcap in brest and throughout france and europe. a training center opened in brussels. in 2007, the french nidcap center, brest hosted the 18th annual nidcap trainers meeting in combrit, brittany, france and invited professor sunny anand, an internationally renowned neonatologist for his research work on neonatal pain. in 2011, the first french-speaking nidcap days were organized in brest. since then, every year, these sessions take place in one of the french or belgian centers with staff trained in nidcap and in the past few years for those with fine 2. these allow the opportunity for beautiful reflections and reunions around a different theme each year. nidcap progress in brest continued with the training of additional nidcap professionals. at the beginning of 2013, i, sylvie minguy, became the second nidcap trainer, guided by agneta kleberg and deborah buehler. over time, the two trainers expanded their training efforts and obtained authorization to provide new training such as fine 2 and the soffi program. a little later, jacques sizun and isabelle olivard became nbo trainers with the help of yvette blanchard. these three training programs are very successful among french teams. expansion of nidcap as the demand for nidcap training grew, the second french nidcap training center opened its doors in 2017 in toulouse. in january 2020, jacques sizun and nathalie ratynski left brest hospital to join toulouse hospital. dr jean-michel roué took over the directorship of french nidcap center, brest which now has six nidcap professionals, two of whom are working full time in the unit. this time is shared between the various trainings, the nidcap follow-up of children and their families and the coordination with the outpatient follow-up services for vulnerable children. the training of new nidcap professionals is being planned. we work in close collaboration with the french nidcap center, toulouse and organize regular meetings. we distribute the training according to requests, availability, and the geographical location of the requesting centers. there is a frequent exchange between trainers and trainers in training. indeed, two new nidcap trainers guided by delphine druart will be operational in france in the near future. although it has not always been easy, over the past twenty years the program has continued to grow. we have evolved enormously and integrated all the techniques of developmental care into the organization of care, always keeping in mind to place the infant and his family at the heart of the system. it seems to me that if, at the beginning of nidcap implementation, we had been told that system-wide changes would take place during these years, we would not have believed it! achievements among many, two great moments enriched the process of setting up the nidcap program in brest and provided even greater motivation to all the teams: after several months of hard work in 2011, the intensive care and neonatology departments obtained nidcap nursteam of resuscitation and neonatology caregivers at the 20th anniversary celebration of nidcap in brest. parents and former premature children came to share their stories and the impact of nidcap on their hospitalization. 2022 • developmental observer • 23 ery certification. this work carried out by all the units of the women-mothers-children department of the hospital has brought about a common dynamic and made it possible to continue the dissemination of the nidcap philosophy to all the units. during the nidcap nursery certification visit in december 2010, the expert site visitors, karen smith, msn, james helm, phd and roger sheldon, md pointed out the strengths of the unit. they highlighted: • the quality of care provided to newborns: one of the best among all the units visited by them. • the quality of relationships between caregivers, infants, and families with mutual respect • single room architecture. another great moment was the big event in 2018 organized to celebrate the 20th anniversary of the implementation of the nidcap program. supported by the hospital directors’ board, we were able to organize two memorable days of events for all the teams. the first day was devoted to children and their families with make-up workshops, clown shows, a music concert, and a gigantic snack. it was an opportunity for parents, children, and professionals to meet and celebrate. the demand was so great, we were unable to accommodate everyone. the second day brought together professionals from different units and peripheral hospitals in the region, as well as many parents and representatives of the “sos préma” parents’ association with whom we have been working closely for 15 years. parents and former premature children came to share their stories and the impact of nidcap on their hospitalization. among them, morgane, born at 25 weeks, and her mother, came to tell their journey, sometimes difficult but so moving, from a little girl born at 25 weeks to a brilliant student in foreign languages at the university. morgane and her family were featured in my “advanced practicum” during my nidcap training 20 years earlier! during these days, we also had the chance to welcome joy browne for a conference on the role of parents in neonatology services. it was a real joy to see joy back in our department! in addition, several nurses and doctors from the resuscitation and neonatology units spoke to the evolution of their daily work with children and their families. we said to each other as we left “rendez-vous for the thirty year anniversary!!” just one final story… on may 1, 2022, benoit, the father of gabin who was born in brest in may 2020 at 26 weeks gestation, sailed across the atlantic ocean in an amateur transatlantic race, ‘cap martinique’. all skippers sailed under the logos and colors of a cause near and dear to their hearts. gabin’s father chose to sail under the colors of nidcap in recognition of the care of his baby, but also of his family during his hospitalization! the nfi sent him the logo that was displayed on the sails of his boat throughout the crossing, from la trinité-sur-mer, brittany, france to fortde-france, martinique. thus, the nidcap adventure continues for all! i was present for the start of the race on may 1st in la trinité-sur-mer. here are some photos of the event. 10 • 2022 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 goldstein ferber s 1, mcanulty g2, klinge g3, weller a1, als h2 1 department of psychology and gonda brain research center, bar ilan university, israel. 2 department of psychiatry, boston children’s hospital and harvard medical school, usa 3 department of neonatology, schneider children’s medical center, sackler medical school, tel aviv university, israel. aims this presentation outlines the pathways through which nidcap promotes hypothalamic control of cognitive development by attenuating inevitable nicu stress, thus regulating over-arousal, flaccidity, and shutdown. methods by integrating past decade’s research on the hypothalamus and preterm infants. results hpa -three hormones regulated by the hpa, melatonin, cortisol and oxytocin, are implicated in the preterm infant’s nicu experience: melatonin as regulator of circadian rhythm maturation and in turn influencer of cognitive development1 (bayley scales); cortisol as regulator of stress modulation, and oxytocin as mediator of parent infant affectionate relationship and bonding. moreover, preterm newborns lack the capacity to generate a full adrenocortical response to stress or illness, which conversely, later in development turns into a disproportionate increase in glucocorticoid action and over-arousal states. hpt congenital hypothyroidism is frequently associated with the development of intellectual disability. often it is involved in the association of lower gestational age at birth and impaired cognitive and self-regulation functioning later on.2 in addition, inadequate hpa stress regulation in preterm infants further compromises their hpt function through hpa-hpt cross-connectivity. hpg fluctuations of progesterone and estrogen levels are relevant for females’ optimal hpa reactivity. in males, early programing of testosterone levels affects hpa and testosterone reprogramming during puberty and is necessary for adaptive hpa reactivity in adulthood.3 thus, all three axes of the hypothalamus and their ‘crosstalk’ are relevant, either by direct or by secondary impact,3 to the understanding of prematurity and its resulting compromised cognitive and self-regulation development. the variability documented in the methylation of the genes of these metabolic neurochemicals’ receptors, oxtr, nr3c1 and nrf2, may suggest that hypothalamic regulation works in concert with the epigenetic effects to bring about an optimal range of receptor availability if supported by optimal environmental inputs. reduction of stress may bring about compensatory transcription processes in the hypothalamic pathways. thus, ameliorative alterations of the epigenome are possible with balanced environmental inputs.4,5 relevance to nidcap by affecting stress reactivity and the hpa, nidcap methods appear to affect the function of the hypothalamic axes, which show association and causality pathways with cognitive and self-regulation functions. it is postulated that feedback mechanisms and correction signals of hypothalamus-based homeostatic modulating functions account for the stress reduction brought about by very early nidcap intervention. conclusion the balancing effects of nidcap are fed back to the hypothalamus for correction of the signaling to prefrontal cortex, the seat of executive functions. given their bi-directional pathways, in turn the neuro-hormone and neuropeptide production levels adjust accordingly. references 1. ferber sg, als h, mcanulty g, peretz h, zisapel n. melatonin and mental capacities in newborn infants. journal of pediatrics. 2011, 159(1):99-103.e1. doi. 10.1016/j. jpeds.2010.12.032 2. mcbryde m, fitzallen gc, liley hg, taylor hg, bora s. academic outcomes of schoolsged children born preterm: a systematic review and meta-analysis. jama network open. 2020, 3(4):e202027. doi: 10.1001/jamanetworkopen.2020.2027. 3. oyola mg, handa rj. hypothalamic–pituitary–adrenal and hypothalamic–pituitary–gonadal axes: sex differences in regulation of stress responsivity. stress. 2017 sep;20(5):476494. doi: 10.1080/10253890.2017.1369523 4. goldstein ferber s, trezza v, weller a. early life stress and development of the endocannabinoid system: a bidirectional process in programming future coping. dev psychobiol. 2021, 63(2):143–52. doi:10.1002/dev.21944 5. ferber sg, roth tl, weller a. epigenetic fragility of the endocannabinoid system under stress: risk for mood disorders and pharmacogenomic implications. epigenomics. 2020, 14(8):657-660. doi.org/10.2217/epi-2020-0037 nidcap: a psychoneuroendocrine perspective doi: 10.14434/do.v15i1.33777 “we would like to see more clinical practice sessions, open discussion around apib and small discussion groups.” nidcap trainers meeting feedback 12 • 2020 • developmental observer my nidcap journey as an interpreter michiko doi, ba freelance japanese – english conference interpreter as i begin to write this article, i can’t help but think of all the healthcare professionals around the world who are in the midst of the very difficult fight against the new coronavirus. they have their own families and friends as well as themselves to care for, and yet they are giving all they can to save people afflicted. my sincerest gratitude and respect goes to them. their dedication, however, is not only in times of emergency. it is constant so constant that people may take it for granted. childbirth also tends to be taken for granted. it is regarded as something that just happens, often without any problems. now i know that it is not, especially when a baby is born early for some reason, and that is when everybody involved strives to provide the best possible care in their respective capacities. my experience as an interpreter in the nidcap trainings in japan has taught me this. i am not in the healthcare field. i am a japanese-english interpreter by profession. recently, in response to the growing need of international interactions in healthcare, i have often been asked to serve in healthcare-related conferences and technical visits. the nicu, however, had been an unknown world to me until i first stepped into one in 2007. what i am about to share with you are the observations of a complete outsider. this outsider, however, has a keen interest in people, especially in a growing child as a biological and social being. so i knew even before actually becoming involved in the nidcap training as an interpreter that i was going to enjoy it. my encounter with nidcap and the journey which followed have been a truly rewarding and inspiring experience for me. the beginning it was in nagasaki in 2004 that i met dr akiyama, then a professor of orthopaedic surgery at nagasaki university hospital, when he organized a conference on early developmental intervention for high-risk newborns. as is always the case, i asked for relevant information such as the speakers’ cvs, their presentation materials and recommended literature. these are doi: 10.14434/do.v13i2.31057 introduction thirteen years ago i had the opportunity to go to tokyo, japan with heidelise als to participate in a special seminar on developmental care. we were introduced to michiko doi who not only provided the professional translation of our lectures, but remained with us throughout our entire stay providing both interpreting and cultural guidance as needed. little did i realize the lifelong professional and personal relationship that would evolve between us. michiko provides her insight into some of the difficulties for respected and experienced neonatal professionals to absorb new perspectives as nidcap trainees. she has demonstrated enormous patience as she interprets our complex discussions on some of the very subtle and nuanced aspects of caring for infants and families. as michiko states, there is often more than mere translation required to communicate many of our nidcap terms and concepts. michiko is the most flexible yet sturdy bidirectional bridge for our nidcap training communication. this involves both language and its inseparable cultural contexts. she has been indefatigable in her support of me from early mornings through late evenings, including professional work and social gatherings, from my arrival in japan until my departure year after year. not only has michiko provided her excellent service as an interpreter for the nidcap work in japan, she has become the informal national advisor and counsellor as well as champion of all those involved in this work. while i have had the privilege and joy to be the nidcap master trainer for japan articulating the voice of the newborn, michiko has been my japanese voice, for which i am most appreciative of her time, patience and trust. gretchen lawhon, phd, rn, faan clinical nurse scientist with newborn special care associates, pc at abington jefferson health nidcap master trainer with west coast nidcap and apib training center michiko doi developmental observer • 2020 • 13 very important for interpreters to make good preparation for the day. i usually start by grasping general ideas of the topic through reading all information available, then familiarise myself with the terms and expressions in both japanese and english, and also do some research to deepen my own understanding of the topic. in the process, i came across some key concepts and terms, and among them was the name ‘t. berry brazelton’. it turned out to be quite a challenge for me mainly because the information available in japanese was rather limited. with the kind help of dr akiyama and his colleagues i survived. in july of 2007 an opportunity presented itself to translate at a seminar with dr heidelise als and dr gretchen lawhon at tokyo women’s medical university hospital. this offer came from dr ohgi, once a collaborator with dr akiyama and then a professor of physical therapy at st christopher’s university in hamamatsu. it was a two-day seminar including both lectures and demonstrations, which, in fact, became the first milestone for nidcap in japan. i remember the room was packed with an enthusiastic audience and filled with expectations for something innovative. dr nishida, then a professor of neonatology and the organiser of the seminar, later confessed he himself had little idea about what to expect because nidcap, at least then, was largely unknown in japan. therefore, there was almost no relevant information available in japanese. all i had with me was the power point presentations prepared by the speakers, which had kindly been provided well in advance. i studied them very hard. dr als and dr lawhon were kind enough to answer the many questions i had to ask for clarification. the fruit of this seminar was evident; it generated a momentum to move forward with nidcap. as a companion in 2009, the first nidcap professional training began at tokyo metropolitan hospital, bokuto, for four trainees with gretchen. i don’t think i need to go over the process here. so, instead, i would like to share some of my experience as an interpreter during the training. the interpreter is supposed to help fill the gaps, or become a bridge in communication. like any two languages, japanese and english are different from each other in many ways. i usually find technical terms are easier to cope with because they usually have a one-on-one match in any two languages, so the interpreter’s work is mainly to memorise. the nidcap terms and expressions, however, have more nuances. you really have to think what word or expression is most suitable in a given context, especially knowing that your translation will probably be used for some time in the future. some terms in the observation sheet needed more than translation. we even asked gretchen to physically demonstrate them so that we could clearly grasp the link between the japanese translation of the terms and their meanings! communication doesn’t rely only on languages. perfect translation doesn’t always guarantee quick communication. in the training, professional backgrounds play a big part. experienced, caring trainers like gretchen and joy browne have wide and profound insight into gaps arising from different backgrounds and they are prepared. the trainees, on the other hand, are likely to be trapped by such gaps, especially when they are trying to see something familiar to them in the different light. of course, they have good reason to be. they struggle because their knowledge and experience interfere with the absorption of new perspectives. this creates a gap. gretchen lawhon and michiko doi. 14 • 2020 • developmental observer there are also gaps stemming from differences in various systems in society including healthcare. with the word ‘nicu’, for instance, the picture that you may draw in your mind may be quite different from someone else’s. what exists in one country or hospital may not exist in another; what is possible in one country or hospital may not be so in another. gaps can be much more complex. so we have to be conscious of the possibility of such gaps and work towards a common understanding, and the interpreter walks the process as a companion. the beauty of all this in the training is that often this kind of struggle leads to a better understanding of the subject, and more importantly it nurtures a better relationship between the trainees and the trainer, among the trainees themselves and among all involved including the interpreter. it requires time, patience and trust in what you do regardless of the roles. i have witnessed many moments of such connectedness, and i am always impressed and supported by the nurturing attitude which dominates the team. currently in japan there are nineteen nidcap professionals and four are in training, involving seven hospitals. five are in training to become trainers. how exciting! thoughts on universal values in nidcap much of my nidcap experience has been new to me, but i’ve never felt anything about it remote or irrelevant. nidcap, at its core, has some universal values which all humans can relate to and benefit from. let me mention just a few. observation may appear to be a passive activity, but it is not. fully committed observation like in nidcap can reveal so much so deeply. it is an active listening. it is from there that we gain an understanding and develop ideas and thoughts and eventually translate them into action. reflection is another form of observation, that is, to observe your own thoughts and feelings, which i think is very important for everyone. in some cultures like japanese culture, correcting weaknesses is more emphasized than acknowledging strengths. nidcap tells us we all have strengths to build upon from which to grow, however small we may be. ‘small’ in this case can refer to the physical or to ability and capability. nidcap also reminds us that we grow in relationships. subtlety is another characteristic of nidcap. as an interpreter, i always need to be conscious of it and have solutions. whenever i am tempted to think that there should be an easier way of describing something, i quickly remind myself that simplification in words may result in the dilution, if not loss, of the real meaning. while languages can open up so much space for positive communication, they also have limits when they are used just as signs and labelling for convenience. in this sense, the interpreter is just a bridge, and it is all up to the people on both ends whether they walk cross it to meet or not. of course, i, as an interpreter, want to be a good strong bridge. towards an end and beyond in japan, the training of nidcap trainers is underway and we are hoping to see the first japanese nidcap trainers certified within the year. a national training centre with a multihospital structure is also in development. when all this has been achieved, my work as an interpreter will end. sad personally, but for japan it’s really a huge celebration for the babies and their families, nicu staff, hospitals and society at large. dr nishida, the honorary chairperson of japan developmental care research association (jdcra), has long been the principal author of ‘scientific basis of clinical neonatology’, one of the most valued and widely used textbooks in the field in japan. a very important section was added to the latest 2018 edition: synactive theory and nidcap. it is brief but extremely significant because it is read by not only medical students but also students in nursing and other healthcare disciplines. they may not see its significance right away, but at least they know there is such an approach. the section concludes with the following remark: “. . .developmental care skills and knowledge integrating nidcap as a pivot will be put into practice more widely in (japanese) nicus in the near future.” remarks made by a japanese neonatologist left a deep impression on me. he said, “our unit has achieved the country’s best survival rate for some years. we are proud of this, but we know it is not enough. we cannot say, ‘you are fine and ready to go home, so good-bye,’ when we know their lives will go on much longer. nidcap may provide us with a clue as to what action to take to achieve a better prognosis.” the jdcra, the engine of nidcap in japan, has updated its website. although most of it is in japanese, you may still get a feel for what’s going on in this part of the world. i feel i have left out so many important people who deserve much credit in building the initial foundations of nidcap in japan. i can only hope that the readers will have the opportunity to meet at least some of them in future nfi meetings.dr hiroshi nishida, dr gretchen lawhon and ms michiko doi. 10 • 2020 • developmental observer cyprus is a small island situated in the south eastern mediterranean. the republic of cyprus was founded in 1960, after decades of colonial british rule and it joined the european union in 2004 and the eurozone in 2008. since the turkish invasion in 1974 the island has been halfoccupied and the following article refers only to the situation in the area over which the government of the republic of cyprus exercises effective control and where the acquis communautaire of the european union is fully implemented. there are two nicus in this part of cyprus: a level iii nicu, in the archbishop makarios public hospital in the capital nicosia where 800-900 newborns are treated per year, and a level iib, in the general public hospital in limassol that treats around 350 newborns per year. according to the most recent official data, the rate of preterm births in cyprus is 12%, the neonatal mortality rate is 1.9/1000 and the infant mortality rate is 2.1/1000. annual births are between 8,000 and 9,000. due to lack of community support services, babies spend longer in the hospital than they might where there are community nurses. the nicu in nicosia was founded in 1984, by dr andreas hadjidemetriou, the first cypriot neonatologist. with dedication and maximum personal effort he created the very first nicu in cyprus from scratch. his vision was not only to reduce the mortality of sick and premature infants, but also to ensure the best quality of life for these infants. for this reason, he actively supported the implementation of developmental care and with his zeal and perseverance he inspired his successors to do the same. i had the privilege to work under dr hadjidemetriou’s mentoring during my working term in the archbishop makarios hospital (2007-2013), when we laid the foundation for developmental care. we are still collaborating today, on a voluntary basis, through the parents’ organisation “thermokoititha agapis” (“incubator of love”), despite his retirement and my shift to the private sector. my fulltime collaboration with the nicosia unit, as developmental care leader, began in 2007, since the gradual training of all staff on the implementation of developmental care, became one of dr hadjidemetriou’s priorities. on the occasion of my own training to become nidcap professional (2008-2010) and dr maria zeniou’s nidcap training (2010-2012), the nicosia unit initiated close collaboration with dr inga warren, former director of the uk nidcap centre at st mary’s hospital in london. dr warren has generously been providing consultation to our unit through various baby observation workshops based on the nidcap model, for all the staff. under her valuable guidance in 2009, we managed to create the first protocols of care and in 2010 we began a new institution, the “parents school”, which was about weekly meetings between me and parents, in order to support their communication and interaction with their babies. the “parents school” evolved gradually and in 2013, a psychologist and a nurse were added. in 2010, we were pleased to run the first kangaroo care training for members of the staff with dr nils bergman. since then, we are making consistent efforts to increase the number of babies who enjoy “skin to skin” care. the turning point in developmental care implementation was in 2012 with the foundation course: individualised family centred developmental care run by dr warren, ms bond and myself as an assistant. after that course we decided that it was best to take actions to decentralize developmental care, in order to make more people responsible for preparing strategies, taking actions and initiating staff education. for this reason, we established a central (scientific) multidisciplinary developmental care committee and a sub-committee of 13 nurses that were responsible for spreading knowledge to the rest of the staff. in order to support staff education in using the new protocols of care we named an intensive care room as the “educational nursery room” in which the staff was expected to practice according to the new protocols. the educational nursery room helped everybody to change their mentality in doi: 10.14434/do.v13i2.31061 limmasol team left to right: elena vasiliadou, ifigenia smila, maria zeniou (nidcap professional), skevi andorka, christoulla vasiliou, eleftheria konstantoulaki, stalo ioannou, matina lamari. global perspective of developmental care – cyprus pani pantelides, pt consultant neonatal physiotherapist and early intervention specialist senior faculty of the family and infant neurodevelopmental education (fine) nidcap professional, ndt developmental observer • 2020 • 11 caregiving, improved practical skills in developmental care and minimized the gap between training and practical skills. unfortunately, due to overcrowding and understaffing of the nicu, (1 nurse for 4-6 newborns in intensive care and 1 nurse for 8-10 newborns in special care) the above measures faded and the standard application of protocols became inconsistent. finding ways to train our staff was always a big challenge for us and the shortage of nurses inevitably reduces training time. fine (family and infant neurodevelopmental education) was the next big step in family centred care for both nicus thanks to the director of the ministry of health’s nursing services, andreas xenophontos, who passionately supported fine training and has put it under his auspices. this course is mostly taught in greek by myself and dr maria zeniou under the direction of dr inga warren. the goal is for all staff in the nicus, to follow fine 1 and for those possible, fine 2. until recently, five staff members have completed fine 2 and three more are in the final stage. we have also been able to work with dr warren to introduce fine 1 and fine 2 in greece. unfortunately, due to the covid-19 pandemic we had to postpone our second fine 1 training. in nicosia, despite the difficult conditions mentioned above, some basic elements of nidcap implementation have been achieved. there are measures taken towards comfortable and developmentally supportive handling, positioning, limitation of noise, light and other environmental stimuli and protection of sleep. moreover, some first steps have been made for pain management with the use of special pacifiers for premature babies and positioning aids and a protocol to use sucrose or human milk is in development. sometimes stressful/painful procedures take place during kangaroo care, the implementation of which lately has been expanded in the intensive care rooms as well. parents’ interaction and involvement in their baby’s care is slowly progressing. until recently, parents were allowed to be in any room of the nicu for only one hour at noon and one hour in the afternoon. resistance to parents’ participation, partly driven by concerns about overcrowding (the intensive care rooms are extremely cramped), is gradually being overcome with fine training. as a result, since the beginning of 2020, parents are welcomed for one hour at noon and for two hours in the afternoon in the intensive care rooms and for 12 hours (7:00-19:00) in the special care rooms. care giving from parents is allowed only in special care and includes only feeding, bathing and kangaroo care. the goal is to enable parents to be in all rooms in the nicu any time on a daily basis and take care of their babies completely. last but not least, the archbishop makarios hospital in nicosia is working towards becoming a baby friendly hospital with steps to support breast feeding in the unit and the use of human milk. the limassol nicu was upgraded from level iia to iib, in 2018 and is fortunate enough to have a full time nidcap professional, dr maria zeniou, as developmental care leader, who in addition to her medical duties, leads the developmental care team which includes a fine 2 trained developmental physiotherapist and members of the nursing staff who have attended the fine i course. the continuous presence of a specialised physiotherapist is crucial for the newborns’ neurodevelopment and the training of the parents for the post nicu period. in addition, all the staff is duly trained in order to control and minimize environmental stimuli. remarkable effort has been made in limassol to implement family centred care. parents are welcomed 24/7 and they take full care of their babies from the moment they come out of the incubator. they are guided for kangaroo care on a daily basis and maternal breastfeeding is encouraged from birth as the limassol hospital is close to becoming a baby friendly hospital. moreover, there is a protocol to use sucrose or human milk during painful procedures and there is always someone available to support and comfort the newborn. all necessary care giving procedures are planned in order not to interrupt newborns’ sleep. our next big step towards family centred care in cyprus is the upcoming renovation of the nicu in nicosia. with this renovation, among other things, a resting area will be created for parents with the possibility of sleeping and preparing simple meals and more bedside space will be available for a kangaroo care chair to fit and for parents to be more involved in their baby’s care. in addition, there will be an upgrade of the nicu's sound insulation. none of the above would have been achieved without the generous support of the parents’ organization, “thermokoititha agapis” (“incubator of love”) which organizes and finances all staff training regarding developmental care, provides the two nicus with developmental care equipment and has taken over, in collaboration with the ministry of health, the renovation of the nicu in nicosia. last but not least, the full membership of “thermokoititha agapis” in efcni proved to be crucial and extremely valuable, not only for the implementation in cyprus of the european standards of care for newborn health: standards on infant and family centred developmental care (2018), but also for the negotiations with the ministry of health and other stakeholders, on the matter. pani pantelides consultant neonatal physiotherapist and early intervention specialist demonstrating positioning using a doll. 24 • 2022 • developmental observer rwanda is one of the smallest countries in africa, bordered by uganda, burundi, tanzania and democratic republic of congo. it is known as the land of a thousand hills with a population of 13,477,805. it has been 27 years since rwanda came out of one of the most devastating genocides in world history. after the 1994 genocide against tutsi, rwanda started from scratch to rebuild the health system destroyed. the strengthening of the health system in rwanda is a foundation for socio-economic support and the cornerstone of the country’s renewal. the rwandan health sector is a pyramidal structure and consists of three levels: primary, secondary and tertiary (as shown in the diagram below). rwanda currently operates a well-functioning, decentralized public healthcare service system. it is comprised of 1700 health posts, 500 health centers, 38 district hospitals, four provincial hospitals and eight referral hospitals, including two teaching hospitals. rwanda also has a vibrant private health services sector, comprised of two general hospitals, two eye specialty hospitals, 50 clinics and polyclinics, eight dental clinics, four eye clinics, and 134 dispensaries. all public facilities transfer the patients following the pyramidal structure seen above. private facilities may refer to any level of the private or public health system. referrals depend on the condition and needs of the patient. among 50 hospitals of secondary and tertiary levels, 49 have newborn intensive care units. they follow a referral flow depending on the health conditions of the newborn. in rwanda, 12% of babies are born prematurely. newborn mortality rate is 16 per 1000 live births and 30% of newborn deaths are caused by preterm birth complications. rwanda has worked to reduce neonatal mortality through newborn survival initiatives, with a national neonatal care protocol and the establishment of neonatal care units (ncus) in every public hospital to care for sick and small newborns. through the efforts to improve care for sick and small newborns, more preterm and/or low birth weight (lbw) babies are surviving into childhood, yet there is poor health, nutrition, and developmental outcomes among children born preterm and lbw at one to three years in rural rwanda. high rates of developmental delay (52.6%) exist for infants. this is most significant among children born prematurely and/or lbw (67.5%) when compared to children born at term ages at age two to three years (51.1%).1 developmental care the ministry of health and partners in health have created the pediatric development clinic with support from unicef and specialists from boston children’s hospital. the interdisciplinary program is intended to improve health outcomes for babies at risk of death or developmental delays. it is the first program of its kind in rwanda. the clinic started in april 2014 in rwinkwavu district hospital and has since expanded to four districts: kayonza, global perspective on developmental care rwanda patrick manibaho, rm nidcap professional in training, ruhengeri referral hospital, musanze-rwanda patrick manibaho, rm, marie louise uwimana, rm, and jean damascene ndahayo, md overview of rwanda decentralized health care system doi:10.14434/do.v15i2.34367 2022 • developmental observer • 25 kirehe, rutsiro and musanze. the clinic allows health care providers to follow infants after they go home, through regular clinic appointments and community-based support. the program features a weekly nurse-led clinic at health facilities, social supports such as food and transportation money for vulnerable families, and training for staff members in caring for high-risk infants through simple interventions. high-risk families are identified by social workers and receive home visits and community-based support as well. the program also is linked with electronic medical records systems to improve care and tracking of patients’ outcomes. nidcap in rwanda to bring nidcap into rwanda, heidelise als, phd (national nidcap training center, boston) collaborated with two experienced nidcap trainers, natalie wetzel, rn (nidcap germany, training center tübingen) and maria lópez maestro, md (hospital universitario 12 de octubre nidcap training center, spain). these nidcap trainers have started to train our team at ruhengeri referral hospital (rrh). given the travel restrictions due to the sarscovid-2 pandemic, the training is being conducted online. at this time, our team of nidcap professionals in training at rrh consist of two registered midwives (patrick manibaho, rm, marie louise uwimana, rm) and two medical doctors (deborah makasi, md and jean damascene ndahayo, md). zoom meetings, recorded videos and bedside live streaming during observation are the preferred ways to conduct successful training. workshops are scheduled based on availability of trainers and trainees, often twice a month. the nidcap observation write-ups are sent via email for feedback. a reflective session occurs via zoom for review of the nidcap reports. the nidcap observation is conducted in collaboration with nicu staff and family members. healthcare professionals communicate in english. however, the communication with family members is done in kinyarwanda, the main language spoken in the community. the team is looking forward to achieving certifications as nidcap professionals. our longterm plan is to continue our training to become nidcap trainers-in-training and ultimately have a training center in rwanda. our goal is to train our fellow caregivers in hospitals across the country. our group represents the first sub-saharan african hospital to receive nidcap training. references: 1. ahishakiye a, abimana m c, beck k, miller, a c, betancourt t s, magge h, mutaganzwa c, kirk c . developmental outcomes of preterm and low birth weight toddlers and term peers in rwanda. annals of global health. 2019; 85 (1): 147.  doi: 10.5334/aogh.2629. deborah makasi, md issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2022. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or send directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 2 • 2025 • developmental observer this issue offers insights from the recent 35th nidcap trainers meeting, highlighting the exchange of knowledge that defines our global community. these meetings continue to grow in strength and scope, showcasing an outstanding diversity of information and experiences. the picturesque setting of toulouse in the south of france provided a vibrant backdrop for the event, which also served as an invaluable opportunity for networking among delegates representing many countries. in this issue, samantha butler shares the wisdom and legacy of heidelise als, taking us on her inspirational nidcap journey—a testament to vision and dedication. deborah buehler introduces us to an innovative perspective on the synactive theory, exploring its application across all areas of care. the abstracts featured in this issue reflect the diversity and depth of the meeting. from groundbreaking research and new educational approaches to parent-led initiatives and strategies for expanding nidcap expertise. additionally, we are delighted to include poster abstracts that highlight the incredible work of our nfi members. for the first time, we have translated several articles from the original french, making their valuable content accessible to a broader audience. this new venture was made possible thanks to the generous assistance of kiki remont, and i extend my gratitude for her efforts. i would love to hear your thoughts on this new approach to fostering accessibility and understanding. thank you for your continued engagement and dedication to advancing the nidcap mission. kaye spence am facnn senior editor – developmental observer adjunct associate professor australasian nidcap training centre/ university of western sydney editorial cover image: photograph used with permission of the mother in shanghai doi:14434/do.v18i1.40855 a french treat dedication to care from the first moment i observed dr. als with an infant, i was struck by her profound compassion and keen insight into the experiences of newborns and their families. her dedication to improving care for the most fragile patients deeply resonated with me. she demonstrated that even the smallest adjustments, rooted in respect and understanding, could create a transformation on the well-being of others. dr. als’ influence guides how i create environments that prioritize family-focused developmental practices. dr. als emphasized that every detail matters, not just in medicine but in every aspect of how we present ourselves. she reminded us that we are public figures and thus all interactions matter and deserve intention. whether creating an environment to uplift others, preparing for an assessment, or organizing a meeting, attention to detail shapes how messages are received and how others feel within that space. she emphasized the power of projecting confidence, clarity, and empathy to rear connection and trust. this philosophy has extensively shaped my approach, driving me to approach interactions and decisions with thoughtfulness, ensuring that i reflect a sense of well-being, respect, and intentionality. philosophy and mentorship this deep commitment to care was also reflected in her approach to mentoring. dr. als embodied an extraordinary work ethic, dedicating countless hours to her mission and inspiring others with her drive and high expectations. her approach to training was rigorous and comprehensive. through the nidcap curriculum, she cultivated a philosophy of thoughtful engagement, observation, and practice, cultivating a community of clinicians dedicated to individualized developmental care. i feel a profound responsibility to honor and carry forward her vision. in my own nidcap training efforts, i strive to uphold her meaningful approach, providing structure and depth while also offering additional guidance to make the process accessible and encouraging for trainees. this sense of responsibility drives me to motivate others to see the insights she uncovered, publish meaningful research, and promote transformative care practices that improve outcomes for infants and families. dr. als fostered a commitment to listening to, supporting, and inspiring others. through her example, i advocate for the vital role we play in the lives of infants, their families, and others. i believe that as a professional in the field of neurodevelopment, acknowledgments: external reviewers 2024 – samantha butler, marzieh hasanpour, kiki remont. erratum: vol 17, no 3, page 16. the image caption should read: dr. mohammad heidarzadeh and dr. marzieh hasanpour. continued on p.3 6 • 2021 • developmental observer aims understanding sleep states is critical in the interpretation of infant observations. conversations with nidcap and apib professionals and trainers revealed that sleep state recognition can continue to be challenging post-training. sleep is essential for healthy neurodevelopment and recent research on fetal and preterm sleep has expanded our understanding of sleep states, including the category of indeterminate sleep (inds).1 the aim of this survey of nfi members was to explore areas of consistency and discrepancy in the clinical recognition of sleep states. methods an online, anonymous survey was emailed to the nidcap federation international (nfi) membership. the survey asked respondents to identify clinical features of quiet sleep (qs), active sleep (as) and indeterminate sleep (inds). respondents were asked to rank clinical signs in terms of the importance of each as a defining feature of that sleep state (i.e. is this clinical sign “never / occasionally / usually / always” seen, during this sleep state). respondents were invited to add comments and to suggest references. responses were automatically collated by survey software (google forms). the response categories never and occasionally were combined manually, as were the categories usually and always. given the questions asked and number of responses received, formal statistical analyses were not conducted. results/findings 39 responses were received, (17 from nidcap trainers and 17 from nidcap professionals). please see table 1 for details. qs was recognized by almost all as “regular breathing; no / occasional eye opening / closing, eye movements or body movements”. six respondents added “lower heart rate with minimal variability”. as was recognized by most as “irregular breathing; eye movements usually/always present, eye opening/closing occasionally present”. nine respondents added “facial movements and sucking”. there was less consistency of response for body movements and startles/twitches. inds: 19/38, (including 5/17 nidcap trainers) stated that they distinguish inds, from qs and as. inds was recognized by most as “irregular breathing”. however, there was no consistency for eyes opening/closing, eye movements, body movements or startles/twitches. comments suggest that there is discrepancy about recognition of inds. 19/38, (including 12/17 trainers) stated that they do not distinguish inds, from qs and as. reasons included: not an option on nidcap observation sheet (12); not part of my training (7); not familiar with inds. in response to “at what gestational age (ga) does qs time equal as time?”, the median ga was 40w, range 32w to 1 year of age (n=28). comments suggested that this ga may be dependent on ga at birth, and/or the caregiving environment. many other text responses highlighted points for deliberation, which we hope to present and discuss at the annual nidcap trainers meeting 2020. the most frequently recommended introductory reference was graven and browne 20082 (8/23 responses). there was no consensus for more detailed, in-depth references.1,3 limitations the response rate was 39 of 242 (16%) nfi members, and 17/45 trainers (38%), limiting generalizability of results. this survey was not pre-piloted, and some respondents made us aware of ambiguities of wording, that might have led to differing interpretations of questions. understanding sleep states dyck n1,2,3, warren i4, tyebkhan j 1,2,3 1 stollery children’s hospital, edmonton alberta, canada 2 university of alberta, edmonton, alberta, canada 3 edmonton nidcap training centre canada (entcc), edmonton, alberta, canada 4 university college london hospital, london, uk doi: 10.14434/do.v14i1.31811 table 1. results quiet sleep (n = 38) never/occasionally usually/always regular breathing 3 35 irregular breathing 34 2 eye movements 34 3 eyes opening/closing 36 0 body movements 35 1 startles/ twitches / tremors 32 6 active sleep (n = 38) never/occasionally usually/always regular breathing 32 4 irregular breathing 6 32 eye movements 3 34 eyes opening/closing 26 12 body movements 14 24 startles/ twitches / tremors 20 18 indeterminate sleep (n = 20) never/occasionally usually/always regular breathing 18 1 irregular breathing 5 15 eye movements 12 8 eyes opening/closing 12 8 body movements 11 9 startles/ twitches / tremors 12 8 developmental observer • 2021 • 7 conclusion 1. nidcap trainers and professionals are consistent in their clinical recognition of qs and as. 2. indeterminate sleep (inds) is not distinguished from qs and as by many, possibly because they were not taught about inds, and /or inds is not an option on the nidcap observation sheet. considering the role that sleep plays in neurodevelopment we suggest that inds be incorporated into training materials and into nidcap observation. 3. there is little agreement about the age at which total qs equals total as. since this may be related to the infant’s experience and has significance for neurodevelopment, this topic deserves further research. references: 1. dereymaeker a, pillay k., et al. review of sleep-eeg in preterm and term neonates, early human development. 2017, 113:87-103. doi:10.1016/j.earlhumdev.2017.07.003 2. graven sn, browne j. sleep and brain development: the critical role of sleep in fetal and early neonatal brain development. newborn and infant nursing reviews. 2008, 8(4):173– 179. doi:10.1053/j.nainr.2008.10.008 3. bennet l, walker dw, horne rsc. waking up too early – the consequences of preterm birth on sleep development. journal of physiology. 2018, 596(23):5687-5708. doi: 10.1113/ jp274950 31st annual nidcap trainers meeting held virtually 21st – 23rd october 2020 a few comments from the evaluation: 168 delegates attended from every nidcap training center the virtual format was successful and very much appreciated time zones were challenging pearls of wisdom, personal story telling, abstracts and journal club continue to be very popular nfi membership meeting was good and informative shorter days seemed as productive as full days moderators were excellent the prerecorded sessions worked well abstract session topics were interesting, showed some international differences explore opportunities to translate some presentations in advance 4 • 2022 • developmental observer this issue of the developmental observer launches the move from a newsletter to the official publication of the nidcap federation international. we have a fresh look and have introduced some new ideas as we increase to three issues each year – february, june and october. with this expansion we would like to receive stories and articles from the membership. you can submit in any language, or work with the editorial team if english is not your first language. we are challenged each year to meet virtually, yet the content of the nidcap trainers meeting goes from strength to strength. in this issue we see a global contribution from japan, italy, israel, canada, sweden, india, usa, ireland, and france. these perspectives, research and practices all support the nidcap approach to care of the newborn and their families. the abstracts contribute to the body of evidence for nidcap, and we have included the journal club summaries for the first time. magdalena persson pettersen and andré persson from sweden share their beautiful story of benjamin’s start in life with couplet care and all the benefits of this sensitive approach in avoiding separation. we hear about trauma informed care and the road to self-discovery from kristy fuller and her team. our regular features take us to ireland to learn about developmental care and jeff alberts challenges us from the science desk. it is always a pleasure to hear about the fantastic achievements from the membership and this issue we congratulate pierre kuhn on his award. we also have a sad farewell to john buehler who was a strong supporter of the nfi over the years. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia doi: 10.14434/do.v15i1.33774editorial jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, phd, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board developmental observer • 2020 • 3 putting beauty at the heart of the healing process gina ancora1, sandra lazzari2, natascia simeone3 1head nicu, 2 chief nurse, 3nidcap professional newborn intensive care unit, infermi hospital, rimini, italy newborn babies in the newborn intensive care unit (nicu) often face physical, emotional and psychological distress. the parents also may experience emotional, psychological and spiritual suffering during this period, affecting their baby's development negatively. therefore, the baby's development in nicu may be disadvantaged in three ways: their prematurity and the illnesses associated with it, the distress they experienced in the nicu, and the suffering of their parents. there are two main causes of this distress. first, the use of high technology in the nicu can overwhelm and agitate small and fragile newborns and their parents. second, hospitals with closed institution philosophies can perpetuate an unsupportive environment for parents. they may be denied ongoing opportunities to be with their newborn(s), as if they were visitors, hindering their emerging parenting skills and identity. this distress may be quite widespread. how can healthcare systems and professionals address and reduce all this sufferance? solutions may lie in reimagining how to educate the nicu staff. specifically, education and support with a focus on the family and their development as well as on the design of the hospital space to be relaxing and individualized. each family in the nicu experiences their own unique journey. humanity and beauty can be found in the stress and grief that many of them face. grief can often create opportunities and space for sharing, healing and support. creating welcoming nicu environments offers opportunities for families to be at the center of the healing process, where they may feel supported and not so alone. caring for the beauty of the nicu space offers an aesthetic element. it helps to communicate the importance of each person, by caring about them through the natural aspiration to beauty, especially their relationships with a new life. this attention helps to heal parental feelings of helplessness, fragility, resignation and fears of being unable to cope. the humanizing initiative of putting beauty at the heart of the healing process follows an ongoing cultural change in attitude. each individual is cared for as a whole, including their family, while still considering their delicate stage of development. dostoevsky1 said “beauty will save the world”, and in our case it will help to reduce the stress of the nicu environment for newborn infants and their families. it will produce long term benefits for the neurological, emotional, academic and psychological development of the child. important ways to create beauty within nicus are to design clinical areas to be welcoming with comfortable furniture (both for the baby and their parents), offer pleasant views with natural imagery, use soft and indirect lighting, and maintain low noise levels. implementing these changes in the care environment has proved to be effective, for example, in reducing the level of pain and the use of painkillers in adults. in 1948, the world health organization (who) was already defining wellbeing beyond merely the absence of physical illness, but also in terms of quality of life. this approach in the hospital is complex and requires many skills: clinical, artistic and a semi-annual publication of the nidcap federation international ©2020. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria lopez maestro, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer doi: 10.14434/do.v13i2.31058 a backlit artistic panel in the nicu in rimini created with support from the charity la prima coccola onlus. 4 • 2020 • developmental observer in order to create a more welcoming environment, la prima coccola onlus works to fill the new rimini nicu with pictorial spaces and backlit artistic panels throughout the clinical areas occupied by the babies and their parents. technical. the goal of the families that volunteer at “la prima coccola onlus”, a charity founded to support the nicu in rimini with the cooperation of hospital staff, is to draw on the who’s vision. they work to fill the new nicu with pictorial spaces and backlit artistic panels throughout the clinical areas occupied by the babies and their parents. furthermore, work environments that include beauty as a requirement, contribute to the wellbeing of the staff. being surrounded by beauty encourages an open attitude of listening and increased empathy with the babies and their families, producing positive outcomes and more efficient care. reference: 1. fyodor dostoyevsky, the idiot. 14 • 2020 • developmental observer prior to the 1980’s infants in the intensive care nursery who demonstrated feeding problems were described as “poor feeders” with a “weak” or “poor” suck. there was no distinction available at that time to further describe those infants who were unable to orally take sufficient calories to grow. consequently, infants remained in the hospital for extended periods of time because of poor feeding. then the 1980’s saw the birth of the newborn individualized developmental care and assessment program (nidcap).1,2,3 caregivers were suddenly made aware of the stress cues, signs, and signals that preterm infants demonstrated as they were struggling with feeding. caregivers then began to provide infants with frequent “breaks” during feeding by removing the bottle from the mouth so that they could breathe, burp, or just rest after a very long sucking burst.4 this technique of providing “breaks” became known as external pacing. external pacing has always been based upon the cues, signs, and signals given by the infant to the caregiver during feeding and is a consequence of the relationship between the infant and feeder. since each caregiver has his/her own individual style and manner of positioning the infant; holding the bottle; and selecting the nipple, the infant may demonstrate different stress cues for each caregiver and the interpretation of these signs and signals is subjective on the part of the feeder. providing “breaks” during a feeding using this technique of external pacing has been most effective for older infants who are closer to term and who demonstrate longer sucking bursts such as with a continuous burst pattern of 10-30 sucks per burst with swallow and respiration occurring during the burst followed by only a brief pause.5 external pacing was developed as a cue-based technique to aid infants who were experiencing discomfort or distress during feeding and, since the 1980’s, has become very popular and is used effectively and frequently with both late preterm and sick term infants whose sucking bursts consist primarily of more than 10 sucks/burst. this intervention strategy has been effective because breathing appears to be the last function integrated into a successful feeding episode for the preterm infant.6 in the 1990's, with the development of the nomas® (neonatal oral-motor assessment scale), for the first time a distinction was made within the poor feeders; trained examiners were able to diagnose the suck pattern as either disorganized or dysfunctional.7 a disorganized suck was defined as “a lack of rhythm of the total sucking activity”8 which refers to the incoordination of suck, swallow, and breathe. a dysfunctional suck was defined as “an interruption of the normal sucking activity by abnormal movements of the jaw and tongue”.9 those infants who present with a disorganized suck are unable to self-regulate the suck/swallow/breath due to a lack of neurological maturation and respiratory support secondary to immaturity. being able to coordinate the pharyngeal swallow with respiration is a difficult task for many young infants. it is possible, however, for the caregiver to regulate the suck/swallow/ breathe for these infants during their feeding using imposed regulation, a diagnostic-based intervention strategy that may be implemented following a diagnosis of a disorganized suck on the nomas®. this does not refer to a specific technique but rather focuses on the goal for the infant and may be implemented differently for each infant. imposed regulation is most effective with young infants who demonstrate too much variability in the number of sucks per burst or a transitional suck.10 it is difficult for many young infants to inhibit the sucking movement so as to be able to breathe which often results in oxygen desaturation or spells of deglutition apnea.11 imposed regulation is based on the definition and description of the normal immature sucking pattern that is demonstrated by preterm infants. this normal pattern is characterized by very short sucking bursts of 3-5 sucks per burst followed by a pause of equal duration during which the infant breathes and/or swallows.5 this pattern is a burst/pause pattern in which bursts and pauses are of equal duration which requires that the infant stop the sucking activity to pause and breathe. when an infant is unable to do this the caregiver may implement imposed regulation for the first minute of the feeding after which the infant may be able to self-regulate. imposed regulation of the suck/swallow/breathe requires that the caregiver stop the transfer of liquid after three nutritive sucks and swallows to allow the infant to pause and breathe. if the caregiver attempts to build in a pause after five sucks/swallows it will most likely not be successful. some infants will already demonstrate deglutition apnea or oxygen desaturations after just three seconds of sucking and swallowing without breathing. once the normal immature burst-pause pattern has been imposed for one minute the infant may feed well for the remainder of the feeding. if the infant continues to be unable to self-regulate the caregiver may provide imposed regulation for an additional minute always giving the infant an opportunity to self-regulate after each minute of imposed regulation. the technique that is selected to implement imposed regulation is infant-dependent and should be carefully selected on an individual basis for each infant. some of the techniques that have been successfully implemented include: finger feeding; use of alternative utensils; tipping the bottle nipple; removing intervention strategies for the poor feeder in the newborn intensive care unit: external pacing versus imposed regulation marjorie meyer palmer ma, nlp, ccc-slp nomas licensed professional, speech pathologist founder/director, nomas international. www.nomasinternational.org doi: 10.14434/do.v13i1.29089 developmental observer • 2020 • 15 the bottle nipple from the mouth; tipping the baby so as to empty the bottle nipple; and pinching the nipple closed to stop the flow, just to mention a few. it is important to understand the differences in the purpose, goal, patient population, and implementation of these two intervention strategies that are used to improve oral feeding for infants in the intensive care nursery. an understanding of these two intervention strategies is necessary so that the infant’s needs can be individually addressed by prescriptive intervention. external pacing: 1) cue-based 2) used with older infants who demonstrate longer sucking bursts 3) provides breaks when infant is stressed, tired, fussy, needs to breathe, etc. 4) usually implemented by removing the bottle nipple from the mouth 5) once the infant has recovered the bottle nipple is re-inserted regulation: 1) diagnostic-based 2) used with younger infants who demonstrate too much variability in the number of sucks per burst or a transitional suck (nomas®) 3) provided for first minute of feeding; and re-introduced for one minute intervals as needed if infant is unable to selfregulate 4) follows a diagnosis of disorganized suck (nomas®) and prevents stress and discomfort during feeding 5) technique is individualized and infant specific imposed regulation is also an effective intervention strategy for those infants who have problems during the esophageal phase of swallow. the esophageal phase of swallow in infants has received less attention over the years than the oral phase of swallow (sucking). infants who have difficulty during the esophageal phase of swallow such as esophageal dysmotility; retrograde movement; or gastroesophageal reflux may have significant discomfort with feedings and are at greater risk of developing a sensory-based oral feeding aversion later.12 since the average suck/swallow ratio is 1:1 per one second material may be unable to clear the esophagus at that rate. when esophageal nt during feeding and could result in aspiration13. imposed regulation will allow only three swallows followed by a pause of equal duration during which the material has time to clear the esophagus. in addition, when imposed regulation is used for preterm infants during videofluoroscopic studies it will often serve to prevent aspiration that may occur secondary to inability to coordinate the pharyngeal swallow with respiration; fatigue; and esophageal dysmotility and/or retrograde movement. external pacing and imposed regulation are just two of the intervention strategies that may be used for infants who present with poor feeding. the nomas® also diagnoses those infants who have a dysfunctional suck for which very different intervention strategies and treatment techniques are recommended and are beyond the scope of this article that focuses on only two of the intervention strategies for infants who have difficulty with the coordination of suck/swallow/ and breathe. references: 1. als h, lawhon g, brown e, et.al., “individualized behavioral and environmental care for the very low birth weight preterm infant at high risk for bronchopulmonary dysplasia: neonatal intensive care unit and developmental outcome”. pediatrics 1986,78:1123-1132. 2. als h, gilkerson l, duffy f. et.al., “a three-center, randomized, controlled trial of individualized developmental care for very low birth weight preterm infants: medical, neurodevelopmental, parenting, and caregiving effects.” journal of developmental and behavioral pediatrics 2003,24:399-408. 3. als h, lawhon g, duffy fh, et.al., “individualized developmental care for the very low-birth weight preterm infant medical and neurofunctional effects.” journal of the american medical association 1994, 272:853-858. 4. vandenberg ka. “behavioral issues for infants with bpd” in: strategies for total patient care. neonatal network. petulama, ca, 1990,chapter 6: 112-152. 5. gryboski j. gastrointestinal problems in the infant. in: major problems in clinical pediatrics saunders: philadelphia, pa 1975:17-47. 6. vice fl. and gewolb ih. “respiratory patterns and strategies during feeding in preterm infants.” developmental medicine and child neurology 2008, 50(6):467-472. 7 palmer mm, crawley k, blanco i. “the neonatal oral-motor assessment scale: a reliability study”. journal of perinatology 1993,13(1): 28-35. 8 crook ck., “the organization and control of infant sucking. advances in child development and behavior 1979,14:209-252. 9 braun ma, palmer mm. “a pilot study of oral-motor dysfunction in ‘at-risk’ infants.” physical and occupational therapy in pediatrics. 1985/86, 5(4): 13-25. 10 palmer mm. “identification and management of the transitional suck pattern in premature infants.” journal of perinatal and neonatal nursing, 1993,7(1): 66-75. 11 hanlon mb, tripp jh, ellis re, et. al., “deglutition apnoea as indicator of maturation of suckle feeding in bottle-fed preterm infants.” developmental medicine and child neurology 1997,39(8); 534-542. 12 jadcherla sr. “gastroesophageal reflux in the neonate” clinics in perinatology. 2002 march, 29(1). 13 wolf ls, and glass rp. “clinical feeding evaluation” in: feeding and swallowing disorders in infancy: assessment and management. therapy skill builders, tucson, az. 1992,85-147. the 30th annual nidcap trainers meeting members of the 2018-2019 board of directors, portsmouth, new hampshire 8 • 2023 • developmental observer as happens with many things we came across an article by eckleberry-hunt et al1 by chance, while searching the cyber-library for another topic. this article caught our attention because it reminded us of a recent nidcap observation during a training day. the observation was of a very preterm baby, who was six weeks old at the time. her mother, amina, was heavily involved in the care of baby farah (names changed for confidentiality): over the 100+ days of farah’s nicu stay, amina only missed one morning ward round. she gradually took on the active parenting role so that she was doing much of her baby’s care well before discharge. the family was planning to move to another country and amina proactively asked that a follow-up for farah be arranged via the neonatal follow-up program at their future city of residence. amina agreed to the nidcap training observation and graciously gave her permission for the observation to be videoed; clips of the video can be viewed in the snapshots section of the nascent nidcap apib supplement created by the edmonton nidcap training centre canada website (www. nidcapedmonton.com). the observation of farah was done by a nidcap trainee and a nidcap trainer (jmt), together with a video photographer (rc). a five-page nidcap report written in the structured format recommended for nidcap training was given to the mother. some days later while talking to amina, we discovered that although she had seemed very interested in her baby’s behavioural communication, and in the recommendations that arose from our observation, she had not had time to look at the written report. this made us question why this mother who was so involved in her baby’s care and seemed so interested in the nidcap observation, did not read her baby’s nidcap report. it also made us wonder about the value of the detailed narrative report if parents – especially parents who are with their baby in the nicu for much of the stay – will not read it. the article that then popped up about generation z,1 resonated with our experience and turned the nidcap training day into a novel educational opportunity to learn about this new generation of learners, ‘generation z’. how is generation z (gen z) different from other generations? the generations and their distinguishing traits are summarised in the table below. a global survey of 20,000 gen z individuals conducted by dell technologies found that young people around the world share similar values and expectations, such as their desire for work-life balance, their preference for experiential learning, and their reliance on technology. therefore, it is likely that many of the traits of gen z are indeed universal, and not limited to western cultures.2 note that the birth years of the generations vary slightly depending on the source and that there is overlap across adjacent generations for some of the traits. we acknowledge that these are generalisations and that there is much individual variation amongst those of any one generation. the literature indicates that there is validity in these generational trends and traits.3-6 understanding these traits may help us understand the population and families we are interacting with and assist in tailoring our educational methods for the best academic and professional achievement. adapting our educational methods may lead to increased engagement of parents in the active care of their infants, while in the nicu. the dividing lines between the generations are based on world events, for example, world war ii, migration across countries, increasing use of technology, such as television, computers, and the internet, and the resultant changes in lifestyle that occur during the formative years of that age group.1 all of these have influenced how people interact, learn and work, and have thus shaped the expectations of that generation of students and professionals. generation z characteristics gen z is the cohort born after 1995 and thus makes up a large majority of today’s younger workforce. they are the most diverse generation in terms of race, gender, and sexual orientation. they are a hard-working cohort and independent learners and value close mentoring relationships. this is a result of having trusting relationships with their parents in which they received both positive and negative feedback; thus authoritative, didactic styles of learning or feedback do not resonate with gen z.3 gen z is the first generation to have not known a time without the internet and thus has a hard time disengaging from technology. this may seem unfocused to teachers and supervisors who are from the older generations, but this hyperconnectiveness enables gen z to effortlessly use computers, the internet, and social media to access information instantly. despite the facility of gen z at locating information online, they may however not take the time to critically evaluate information, nor educating, training, recruiting, and retaining the best: is nidcap ready for generation z? roman chabba,1,2 b sc and juzer m tyebkhan,2 mbbs, frcpc 1medical student class of 2024, 2dept of pediatrics, university of alberta, edmonton, canada. stollery children’s hospital, division of neonatology; edmonton nidcap training centre canada. roman.chabba@ahs.ca, juzer.tyebkhan@ahs.ca doi: 10.14434/do.v16i2.35786 2023 • developmental observer • 9 are they likely to read assigned readings.4 they are unlikely to visit libraries to look up articles in bound paper journals; in fact, many gen z students do not know of the archived collections of bound journals that were consulted by their teachers in their own student days. the traditional approach to teaching in the nidcap model is based on didactic classroom lectures, with intermittent evaluation and feedback, which is a method that seems counter to the learning methods of gen z. gen z prefers more individualised learning, with immediate answers to questions that arise, and more personalized, rapid feedback.3 gen z is considered to have a very short attention span, described by some as only eight seconds.4 it is questionable if this eight-second span of attention truly describes the attention of these young people when involved in an activity that has engaged their attention. we speculate that this attention span is simply a feature of how gen z surfs the internet. gen z’s hyperconnectivity is challenging educational systems at all levels, not only in the health sciences. suggested interventions to nidcap education and training to engage gen z the youngest generation of healthcare professionals and the youngest nicu parents will now be from gen z. how can we, as nidcap professionals engage our young professional colleagues to embark on nidcap training when the methods used for nidcap training may not resonate with the preferences of gen z? how can nidcap professionals best share the critically important, individualised neurobehavioural information about the infants in their nurseries, with both parents and staff, if neither are likely to read narrative-based reports? the literature suggests that modifications to traditional methods of medical and nursing education are urgently required, otherwise, it will prove challenging to train, recruit and retain the best of the younger generation. educational programs that switch to more active learning methods, encouraging more hands-on participation, with opportunities for discussion and reflection with peers and instructors may prove more effective. at many universities, lectures are now available online to students, who can listen/view them at their convenience, and some choose to do this at faster speeds to save time. online educational lectures (together with other educational resources) are a strategic goal of the nfi and could help to attract our gen z colleagues towards nidcap training. it may be unrealistic to expect gen z to attend a full or even a half-day lecture, where the material is presented to them with little opportunity for interaction. other possibilities to explore are learning experiences where the student leads the teaching activity1 perhaps online discussion groups could occur where trainees decide the topic and are guided by a trainer to direct the discussion. eckleberry-hunt et al1 suggest that gen z expects innovative and creative modalities such as podcasts, interactive tutorials, simulations, and internet-based educational games. kahoot, table 1: generational differences 3,6 name birth years work ethic communication style leadership / feedback technology learning style role today silent gen*/ veterans 1928 1945 hardworking, disciplined formal, by the rules authoritative tech# for leisure didactic, formal, rote memorization take pride in their legacy baby boomers 1946 1964 work hard formal, need details authoritative some tech#; want to master it formal, lectures, note taking, handouts creating a legacy gen* x 19651980 work hard and play hard informal, flexible, keep it professional hierarchical high tech#; want to enjoy it top-down, formal, some e-learning leadership millennials 1981 -1994 work smart fast, efficient, social media coaching all tech#; need to use it on demand, creative learning discover passions; step into leadership gen* z 1995 work fluidly transparent, highly visual, latest social media networked “what tech#?”; tech# is an extension of self constant, mobile, realtime entering workforce legend: *gen = generation; # tech = technology 10 • 2023 • developmental observer socrative, and jeopardy are teaching methods that can be tailored to gen z in that they are fun, promote critical thinking, and can be set up to provide more immediate feedback.5 nidcap and apib (assessment of preterm infants' behavior) training are already based on individualised mentored education, with much one-on-one interaction and immediate feedback from the trainer on training days. this may be attractive to gen z’ers, as they expect quick, personalised feedback, although this (training day immediate feedback) will only happen once the learner has begun nidcap or apib training. thus, the preliminary steps (before a trainee embarks on formal nidcap or apib training) must be more enticing to gen z. if the attention span of gen z is truly very short, then tailoring the material to be responsive to their attention span needs may foster increased engagement. gen z is the future of nidcap and all professions and skills. suggested ways to do this include ‘reverse mentoring’1 and methods where learners can receive help from mentors to appraise the relevance and validity of the information that they have so effortlessly found. it may also be advantageous for gen z trainees if the larger goal(s) of training are broken down into smaller but more obvious milestones of achievement,1 rather than requiring a trainee to wait until the end of nidcap or apib training to either receive certification or not. the use of mobile technology such as individualised podcasts are ways by which information can be shared with gen z parents whose baby is in the nicu. these podcasts could be shared with other caregivers. information relevant to the baby’s developmental progress can only help the baby if families (and staff) have received and understood the key points of their baby’s neurobehavioural observations. perhaps this information must be provided in small chunks, using the technology or social media platforms to which gen z parents and staff are hyperconnected. recruiting from gen z to benefit nidcap given the research presented here, it may be beneficial for the nfi to recruit from the gen z age group, not only to develop the next generation of nidcap professionals but also to learn from them how to engage their peers, and how the nfi can employ educational methods that will be effective for gen z. perhaps each committee, subcommittee and working group of the nfi could recruit one new member from gen z to assist in the development of teaching tools that adapt to the learning methods of their age group. historically, medical education has been hesitant to make reforms.1 some of this hesitation has been due to uncertainty about the impact of educational change on patient care. however, the literature reviewed indicates that we are at risk of losing the best of the young generation if we do not adapt our educational methods as quickly as other professions and occupations.1 to end, we quote from eckleberry-hunt et al1 “the good news is that we have a little time to make changes. the bad news is that we only have a little time to make these changes”. we look forward to attracting gen z toward nidcap training by engaging them in a learning process that optimizes their success. references 1. eckleberry-hunt j, lick d, hunt r. is medical education ready for generation z? j grad med educ. 2018 aug;10(4):378-381. doi:10.4300/jgme-d-18-00466.1. 2. dell technologies. 2018. gen z: the future has arrived. are businesses ready? retrieved from https://www.multivu.com/players/english/8356751-dell-technologies-gen-zworkforce-research/docs/findings_1541456646778-1316356505.pdf 3. jenkins, ryan. 2019. the generation z guide: the complete manual to understand, recruit, and lead the next generation. isbn 13 978-0998891910 4. hampton d, welsh d, wiggins at. learning preferences and engagement level of generation z nursing students. nurse educ. 2020;45(3):160-164. doi:10.1097/ nne.0000000000000710. 5. shatto b, erwin k. moving on from millennials: preparing for generation z. j contin educ nurs. 2016;47(6):253-4. doi:10.3928/00220124-20160518-05. 6. johnson sa, romanello ml. generational diversity: teaching and learning approaches. nurse educ. 2005;30(5):212-216. doi:10.1097/00006223-200509000-00009 mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 2016 vol. 9 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “we are continually faced with great opportunities which are brilliantly disguised as unsolvable problems.” margret mead the nidcap federation international: who are we? this was presented on the first day of our 26th annual nidcap trainers meeting by our nfi president gretchen lawhon in the beginning there was a psychologist who was very determined to understand the premature infant in order to ease his transition to extra uterine life, proactively avoid the iatrogenic effects of the intensive care environment and enhance long-term outcome and quality of life. all of this within the context of the very challenging environmental onslaught to the developing brain and with respect and acknowledgement of the parents who struggled to know and to nurture their son or daughter. this psychologist collaborated with nurses, physicians and therapists and developed the nidcap trainers meeting abstract and presentation edition dear readers, beginning with this edition and all future winter/spring editions of the developmental observer, we will be publishing abstracts and presentations that were delivered at the most recent nidcap trainers meeting, as well as related scientific articles. in this edition, we have published eight abstracts and three presentations that were shared with the participants at the 26th annual nidcap trainers meeting in chandler, arizona, hosted by the st. joseph’s nidcap training center, phoenix, arizona, october 17-20, 2015. in addition, all past (2007-present) and future editions of the developmental observer, will be archived at the iuscholarworks, indiana university (iu). iuscholarworks is supported by the iu libraries and the iu digital library program, a collaborative effort of the iu libraries and university information technology services. please enjoy reading this first abstract edition of the developmental observer. developmentally yours, the editors developmental observer continued on page 2 in 1991, we held our second annual nidcap trainers meeting held in estes park, colorado. table of contents the nidcap federation international; who are we? ............................................ 1 the karolinska experience ....................... 5 nidcap care in the moment ................. 7 state of the science: feeding the fragile infant ............................................. 8 abstracts ................................................... 9 press release .......................................... 17 abstract edition 2 • 2016 • developmental observer a semi-annual publication of the nidcap federation international ©2016. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd e. hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer newborn individualized developmental care and assessment program (nidcap). by 1990 there were half a dozen nidcap training centers and we began to come together every year to enrich our knowledge, ensure the quality of our work and support one another. an example of this support is a message a fellow nfi member sent me as i prepared to come to our 26th annual nidcap trainers meeting. oh, how we worry about: the sanctity and precision of a first breath and the lifespan it determines, shaping the peace and comfort of the inevitable last breath; however and whenever it comes on that east wind, that first experience of mother and child, and bringing meaning and serenity, in a storm of technology and strife, how to marshal our very own empathy, and to deal with the pain we will always feel, what can happen to our humanity, when we carry the weight for others, can it break us? no. we have found the others: those who show us their courage, so in our darkest times we may find our courage again, we have the compassionate symbiosis to support the weight others carry and yet have our burdens lightened by them as well, all of us working for a compassionate, cognitive clarity of caregiving; that truly transcends race religion and international boundaries for the youngest of humans, it is a planetary will for human caregiving now. like a catalyst in this human reaction, will we be consumed carrying the weight for these tiny souls? no. we refuse to be overwhelmed, so, stop. close your eyes, take in a thankful breath, breathe out a courageous one, you are not alone, we all carry your weight, so...with love and compassion, begin again, begin again...and again....and again. —john chappel the nfi is a most amazing professional organization that represents 29 different countries including: argentina, australia, austria, belgium, canada, chile, china, denmark, england, france, germany, iran, ireland, israel, italy, japan, korea, lebanon, mexico, the netherlands, norway, portugal, saudi arabia, spain, sweden, taiwan, thailand, the united kingdom, and the united states of america. in addition to the global presence, the nfi includes many different disciplines such as administrators, assistant nurses, child life specialists, counselors, developmental specialists, educators, family members, lactation consultants, midwives, nurses, nurse practitioners, nurse scientists, neonatologists, newborn intensive care nurseries (nicn) directors, nutritionists, occupational therapists, parents, physical therapists, psychologists, psychiatrists, pediatricians, professors, researchers, respiratory therapists, speech therapists and volunteers. all of us come together as members of the nfi with the purpose and goal of ensuring that one day all infants and families in intensive and special care nurseries will receive individualized and supportive families are their baby’s most important lifelong nurturers. developmental observer • 2016 • 3 family centered care so that they may enjoy optimal health and developmental outcome. as a professional organization we strive to work together, to collaborate and to support one another in this shared goal. our members represent many different roles and levels of sophistication in our efforts to achieve our shared mission. in japan, a highly respected physical therapist and professor works tirelessly beyond his academic duties to bring nidcap education to his country. he coordinated efforts and fundraising to successfully support the training and certification of thirteen nidcap professionals from six different hospitals and now is strategizing on creating and establishing a nidcap training center. there is another physical therapist in atlanta, georgia in the u.s.a. who, as an individual sought out nidcap training, became a nidcap professional, and is becoming an apib (assessment of preterm infant behavior) professional. she continually provides excellent care with infants and families while trying to influence her hospital system to change and become more supportive. a young woman from jordan came to the united states of america to pursue higher education. she has recognized the value of nidcap and managed to build the training into her doctoral program. she returned to her native country as a nurse scientist and nidcap professional dedicated to integrate nidcap into the basic nursing education in her university. a neonatal fellow working in a newborn intensive care nursery of a nidcap center chooses to enhance his medical education by becoming a nidcap professional. a middle-aged nurse who is a lactation consultant in a nidcap certified nursery decides that the synactive theory can guide her dissertation research on breastfeeding readiness in the premature infant. a nurse hears about the opportunity in her hospital to learn a new approach to care for infants and decides to become a nidcap trainee. before completing her own training she decides she would like to become a nidcap trainer and continues to progress to a master nidcap trainer in training. a speech therapist works as a key leadership team member and supports nidcap implementation in her unit including the complete creation of a new environment and, more importantly, the written philosophy of nidcap so embedded that it is part of the interviewing and hiring process for that unit. a young man worked in early intervention and wanted to become more involved in the newborn intensive care unit. he attended national developmental conferences and learned of the nidcap program. he travelled across the country and became nidcap certified. within a few years he successfully obtained federal grant funding to bring together neonatal professionals with early intervention community professionals and designed synactive theory education with two arms of training; nidcap for the nicu professionals. at least a dozen newborn intensive care units around the united states received nidcap training and education with one unit progressing to a nidcap training center. a neonatal nurse attended several different conferences on developmental care. she travelled a great distance to another country to learn nidcap and for a number of years, struggled as a staff nurse now acutely aware of the missed opportunities for infants, and families in her unit. following several years of single handedly advocating for change in practice to include nidcap this nurse traveled again to another country and met with the president of the nfi to arrange nidcap training in her own unit. with her full support and organization, as well as translation services three additional nurses and a physician became nidcap professionals. she and her physician colleague gradually worked to bring their unit to become nidcap certified. both of them have become apib professionals and are currently working as nidcap trainers in training within their nidcap center in development. a seven year old child desperately wants to be a nurse when she grows up. two years later she is given charge of her newest baby sister and provides most of her care including late night bottle feedings. at twenty-six she becomes an overeducated and inexperienced nicu nurse when she meets a psychologist. they begin a now thirty-five year relationship in which this nurse fátima clemente, md (portugal) and graciela basso, md, phd (argentina). karolinska nidcap training and research center team: agneta kleberg, rn, phd, bjorn westrup, md, phd and anna-karin asp, rn, bsn. 4 • 2016 • developmental observer becomes the first nidcap educated nurse and then the second nidcap trainer. she is then so fascinated and fueled by her nidcap work, both in the nicu and in training others that she became a clinical nurse scientist. she established a new nidcap center and later supported nursery certification in another nidcap center unit. by the time she was sixty years old she became the president of the nfi with all of its privilege, honor, challenges, responsibilities and opportunities. in these examples showing the faces of the nfi we see and appreciate the variety of ways in which one can play a part in achieving our mission to promote the advancement of the philosophy and science of nidcap care and to assure the quality of nidcap education, training and certification for professionals and hospital systems. since our incorporation as a nonprofit organization in 2001, the nfi has served as the authoritative leader for research, development and dissemination of nidcap. the nfi envisions a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship based family integrated approach. as a member of the nfi one can have a voice in discussions on our list serve. we support one another with helpful sharing and information and advice. nfi members are encouraged to be more active participants in our professional organization. the nfi has four major committees, each chaired by a member of the board of directors. nfi members are welcome to join committees and actively support the professional organization with time, talent and energy. the program committee ensures the quality and further development and growth of all programmatic aspects of the nfi as the key professional training, certification, education and scientific advancement organization that works on behalf of the best development of all newborns and their families in hospital settings and the professionals engaged in their care. our finance committee is to advise and oversee the overall financial operation of the nfi. the nfi advancement committee is to develop strategies and activities to gain resources and public awareness to support the mission, goals and work of the nfi. the governance committee advises and oversees the board’s activities and policies. the nidcap nursery assessment and certification program recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of nidcap for infants, families and staff. nidcap nursery certification is the culmination of nidcap best practice exemplified. currently our board of directors consists of our founder, an additional three master nidcap trainers, two senior nidcap trainers, two additional nidcap professionals, our treasurer, a fundraiser and a family member. the nfi has two half time consultants; the director of the nnacp and the financial operations and administration director. our membership includes two honorary members, four emeritus members, nine family members, fifty student members and one-hundred eighty-seven professional members. the nfi is an amazing professional organization made up of outstanding individuals who mentor caregivers, change hospitals and improve the future for newborns and their families. we are the voice of the newborn. because we are all so influenced by the synactive theory and the philosophy of nidcap we are able to view one another from the perspective of emerging competence. we additionally are embedded in and appreciate the value of relationships. we understand the importance of our environmental context. we strive to build a cohesive global perspective and identity as we progress in achieving our shared goal. the nfi: who are we? we are the nfi. we have challenges. we have responsibilities. we have opportunities. we are changing the future for infants, families, staff and ourselves. ita litmanovitz, md offers nidcap family support at meir medical center, kfar saba, israel. the nidcap team at “nidcap germany, nidcap training center tübingen.” front row, left to right: ina hübner, rn; natalie broghammer, rn; heidelise als, phd; clivia langer, dipl. psych.; rebekka bauer, rn; back row: l to r: birgit holzhüter, md; christian poets, md; and annette poets, md. developmental observer • 2016 • 5 the most vulnerable patients in our health care system are probably the ill term newborn and the prematurely born infant, due to central nervous systems in rapid development and consequently immature systems for autonomic control and stress regulation. the multidisciplinary based care philosophy called developmentally supportive care has evolved along with the ever-increasing success in treating severely ill or extremely premature born infants. with increasing survival comes the subsequent growing attention to long-term medical and mental health, as well as the neurobehavioral and social functioning. neonatology has developed to hold a holistic perspective, where high-technology medicine and pharmaceutical treatments are integrated with general caregiving, taking into consideration the research findings from the social and neurobehavioral sciences. nidcap is the only infant and family centered developmentally supportive intervention designed to be implemented right from the moment of birth. it is also unique compared with other programs by incorporating a systems perspective in the care of the infant and its family. this includes the environment around the infant, the organization and design of the nursery and of the hospital.1 a key concept for all effective intervention is the ability of parents and staff to read and understand the behavior of the immature infant, in order to individualize support and facilitate co-regulation between caregivers and infant. this is the basis of an attuned and sensitive interaction.2 optimally, there is a sensitive and responsive parent-infant interaction, a co-regulation, between child and caregiver to organize the child’s control of bodily functions, and an ability to manage primary emotions and to maintain focus and attention with the social environment—primarily the parents. by improving co-regulatory competencies as well as providing the environmental and task activities that the infant expects and can handle, the intervention program enhances the infants’ information processing and abilities to explore. in concert with supportive actions to maintain autonomic stability, the objective of developmentally supportive care is also to create conditions under which the brain can mature, create and maintain adequate neuronal connections between different parts of the brain and consequently develop mechanisms for more complicated human functions such as stress regulation and ability of social interaction.3 from a neurobiological developmental perspective it is therefore logical to implement interventions ultra-early—from the moment of birth—and throughout the hospital stay as proposed by nidcap. multidisciplinary developmentally supportive interventions during the hospital stay, as well as after discharge, are important means to address these challenges.2, 4 the interventions seem to play the most evident role among the infants at “double risk,” i.e., infants that have experienced medical complications during the neonatal period and/or are born into socially less privileged families.5, 6, 7, 8 these interventions have shown to improve brain development and positively affect the cognitive and psychomotor development of the infant.3 from an economic perspective it is very important that, by providing a comprehensive developmental care program or facilities for parents to live in the nursery, the length of stay has been reported to be reduced. it has also been demonstrated that developmentally supportive interventions are more cost-effective the earlier they are initiated.9,10,11,12 for more than twenty years the department of neonatology at the karolinska university hospital has used nidcap as a philosophy of care and as a primary program for infantand family-centered developmentally supportive care. we have gradually increased the presence and participation of parents in the care of their babies. parents are the primary caregivers, with individualized and attuned support from staff. the staff are the facilitators of co-regulation, attachment and bonding instead of “doers.” the karolinska neonatology department consists of three separate nicus (level iib, iii and iv). we have approximately 17000 deliveries annually and 10% of these infants are admitted the karolinska experience stina klemming, agneta kleberg, björn westrup, ann-sofi ingman parents are the primary caregivers, with individualized and attuned support from nicu staff. pairing skillful medical care with attuned nurturance. 6 • 2016 • developmental observer to one of our neonatal wards. one at a time, we have reconstructed our nurseries. in 2016, all three units will be specially designed for infantand family-centered individualized developmentally supportive care, with family rooms, couplet care rooms and family areas in the special nursery and intensive care units. the family rooms are designed as hotel rooms with a shower and bathroom. the nicu rooms are also designed for familycentered care. however, we do not have single rooms during the most acute phase, but multipurpose rooms for three to four infants. this ensures that staff are present all the time and that infants always are under visual monitoring and cared for instantly whenever needed. parents receive on-going, individualized support and encouragement as they care for their infant. no baby is left alone and nursing staff can support parents and infants easily and promptly. the atmosphere in the nicu is calm, low keyed and pleasant for infants, parents and staff. the environment and the bedding around the child are tailored to the individual needs of the infant and comfort for the parents. depending on level of care, every nurse cares for two to six infants and their parents. couplet care is an emerging concept of newborn care that provides rooms for parents to live in the nursery with their infants throughout the entire hospitalization, by coupling the care of the infant with the care of the newly delivered mother, with medical needs of her own. over the years it has become clear that the engagement of the families as primary caregivers from the very start is important. the parental engagement plays a crucial role in effectively implementing all the categories of developmental care mentioned above. when introducing couplet care, it is very important to appropriately adjust the design and structure of the nursery. moreover, it is essential to build structures for a close collaboration with the obstetrics department since they have the medical responsibility for the mothers in the nursery, including mothers with more advanced conditions such as pre-eclampsia, hypertension, infections, diabetes etc.13 the psychological bonding of the parents to the infant, the infant’s attachment to the parents, and subsequently their capability to adequately interact with each other, are of equal importance for the future health of both infant and parents.3 this developing parent-infant relationship begins at pregnancy and may be interrupted by the premature birth or the unexpected illness of a term infant. this developing relationship may be negatively affected by the crisis reaction of the parents as the infant is admitted to the nursery. the behavior of a prematurely born or sick infant is different from that of a healthy full term baby as its behavioral cues are weaker and often more difficult to interpret and adequately respond to. this may further complicate parentinfant interaction.14,15 therefore, it is important to organize care that will minimize the separation of parents and infant, and help to facilitate the ever evolving parent-infant relationship. for twenty years, the karolinska neonatal department has an established early discharge program that enables us to care for patients in the family’s own home. approximately half of our patients, at any given moment, are in the early discharge program. most infants can be discharged to home-care when they reach approximately 34-35 weeks of postmenstrual age. discharge is guided by an individualized medical evaluation; when an infant is stable in autonomic functions and care can continue safely at home (we do not have a strict age or weight limit that determines discharge readiness). breastfeeding is the primary way of feeding and therefore many babies continue to be fed with a nasogastric tube parallel to breastfeeding close to term age. we have a high incidence of breast feeding for both term and preterm babies.11 karolinska university hospital is engaged in global health and infant survival for very low birth weight babies (vlbw). since 2014, we have instituted a scientific program to stabilize infants from week 28+0 using immediate skin-to-skin care. this project is run in collaboration with countries in africa and asia with the objective to lower mortality in vlbw babies. at karolinska, parents care for their baby skin-to-skin (kangaroo care), for an average of eight hours a day. babies have the right to receive support and comfort from their parents whenever undergoing unpleasant procedures. we strive to involve parents to support their baby whenever the baby needs to undergo a potentially stressful procedure. infantand family-centered, developmentally supportive care recognizes that the newborn infant is a human being in his hospital care for the entire family. the art of helping “if one is truly to succeed in leading a person to a specific place, one must first and foremost take care to find him where he is and begin there…” —søren kierkegaard danish philosopher (1813-1855) developmental observer • 2016 • 7 or her own right, and supports health professionals to be guided by the current needs of the individual infant and family. this makes good biological sense and is ethically sound.16 *stina klemming, md neonatologist, nidcap trainee *agneta kleberg, rn, phd senior nidcap master trainer *björn westrup, md, phd neonatologist, nidcap professional *ann-sofi ingman, rn nidcap trainer *karolinska nidcap training center, karolinska university hospital, stockholm, sweden references: 1. nidcap federation international. http://nidcap.org [updated 2014]. 2. spittle a, orton j, anderson p, boyd r, & doyle lw. early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. the cochrane database of systematic reviews. 2012;12:cd005495. pubmed pmid: 23235624. epub 2012/12/14. eng., spittle a, orton j, anderson pj, boyd r, doyle lw. early developmental intervention programes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. cochrane database syst rev. 2015 nov 24;11:cd005495. doi: 10.1002/14651858.cd005495.pub4. 3. shore an. the effects of early relational trauma on right brain development, affect regulation and infant mental health. infant mental health journal. 2001; 22(1-2): 201-46. 4. hedlund r. the infant behavioral assessment and intervention outreach project: supporting the neurobehavioral organization and development of infants with disabilities, h324r020041, usde, 2003-2006. final report, h324r020041, usde, submitted to the us department of ecucation, 2006. 5. als h, duffy fh, mcanulty g, butler sc, lightbody l, kosta s, weisenfeld ni, robertson r, parad rb, ringer sa, blickman jg, zurakowski d & warfield sk. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. journal of perinatology: official journal of the california perinatal association. 2012; oct; 32(10): 797-803. pubmed pmid: 22301525. pubmed central pmcid: pmc3461405. epub 2012/02/04. eng. 6. koldewijn k, van wassenaer a, wolf mj, meijssen d, houtzager b, beelen a, kok j & nollet f. a neurobehavioral intervention and assessment program in very low birth weight infants: outcome at 24 months. journal of pediatrics. 2010 mar; 156(3): 359-65. pubmed pmid: 19880139. epub 2009/11/03. eng. 7. verkerk g, jeukens-visser m, houtzager b, koldewijn k, van wassenaer a, nollet f & kok j. the infant behavioral assessment and intervention program in very low birth weight infants: outcome on executive functioning, behavior and cognition at preschool age. early human development. 2012 aug; 88(8): 699-705. pubmed pmid: 22406323. epub 2012/03/13. eng. 8. verkerk g, jeukens-visser m, koldewijn k, van wassenaer a, houtzager b, kok j & nollet f. infant behavioral assessment and intervention program in very low birth weight infants improves independency in mobility at preschool age. journal of pediatrics. 2011 dec; 159(6): 933-8 e1. pubmed pmid: 21784445. epub 2011/07/26. eng. 9. montirosso r, del prete a, bellu r, tronick e & borgatti r. level of nicu quality of developmental care and neurobehavioral performance in very preterm infants. pediatrics. 2012 may; 129(5):e1129-37. pubmed pmid: 22492762. epub 2012/04/12. eng. 10. peters kl, rosychuk rj, hendson l, cote jj, mcpherson c & tyebkhan jm. improvement of shortand long-term outcomes for very low birth weight infants: edmonton nidcap trial. pediatrics. 2009 oct;124 (4): 1009-20. pubmed pmid: 19786440. epub 2009/09/30. eng. 11. ortenstrand a, westrup b, brostrom eb, sarman i, akerstrom s, brune t, lindberg l & waldenström u. the stockholm neonatal family centered care study: effects on length of stay and infant morbidity. pediatrics. 2010 feb; 125(2): e278-85. pubmed pmid: 20100748. epub 2010/01/27. eng. 12. doyle o, harmon cp, heckman jj & tremblay re. investing in early human development: timing and economic efficiency. economics and human biology. 2009 mar; 7(1): 1-6. pubmed pmid: 19213617. pubmed central pmcid: pmc2929559. epub 2009/02/14. eng. 13. westrup b, stjernqvist k, kleberg a, hellstrom-westas l & lagercrantz h. neonatal individualized care in practice: a swedish experience. seminars in neonatology: sn. 2002 dec; 7(6): 447-57. pubmed pmid: 12614597. epub 2003/03/05. eng. 14. als h, duffy fh, mcanulty gb. behavioral differences between preterm and full-term newborns as measured with the apib system scores: i. infant behavior and development. 1988; 11: 305-18. 15. forcada-guex m, borghini a, pierrehumbert b, ansermet f & muller-nix c. prematurity, maternal posttraumatic stress and consequences on the mother-infant relationship. early human development. 2011 jan; 87(1): 21-6. pubmed pmid: 20951514. epub 2010/10/19. eng. 16. convention on the rights of the child, (1989). nidcap care in the moment family supporting their baby during medical care 8 • 2016 • developmental observer erin sundseth ross department of pediatrics, university of colorado denver, school of medicine, denver, colorado feeding is a developmental milestone for infants in the neonatal intensive care unit (nicu) – both for those born prematurely, and for those born with medical morbidities. despite advances in medical care, the average post-menstrual age for attainment of full oral feedings in infants born prematurely continues to be in the 36th week for healthy infant born over 29 weeks pma, and in the 37th week for those born before 29 weeks pma.1 infants born prematurely who have medical comorbidities are typically achieving this milestone in the 37th to 39th week pma.1 therapeutic interventions that are primarily motor-based with the goal of decreasing the age of full oral feedings have not been successful. unfortunately, despite this lack of evidence these motorbased programs are widely in use. what differentiates motorbased interventions from feeding programs that are based upon a more holistic approach is that motor-based interventions are targeting rate of oral intake, transition time from initiation to full oral feeding, and length of stay; quality is not typically a main objective of these studies. additionally, post-discharge outcomes are not currently available for any of these interventions. the lack of post-discharge data is concerning, given the high prevalence of feeding and growth problems in children born pre-term.2-4 infant-led feedings have begun to emerge, with some promising data. initially, “cue-based” feedings focused on initiating feedings based upon infant readiness behaviors.5 more recently, infant-led feeding programs have been developed.6,7 these differ in that they focus on observing a variety of infant behaviors, typically across the channels of communication described in the synactive theory of newborn behavioral organization and development.8 the role of the feeder as a co-regulator is also increasingly appreciated, as is the importance of the parent being the primary feeder. feeding requires an ongoing attention and response to the behavior of the infant, with support of regulation being a primary focus. in addition, breastfeeding is finally being recognized as the gold-standard for infant-led feedings. as such, myths about breastfeeding in the nicu setting are being refuted using good quality research.9 as feeding interventions change focus from a “volume-driven” to “infantand family-focused” perspective, hopefully feeding outcomes post-discharge will also improve. references 1. van nostrand sm, bennett ln, coraglio vj, guo r, muraskas jk. factors influencing independent oral feeding in preterm infants. journal of neonatal-perinatal medicine. mar 12 2015. 2. ross es, browne jv. feeding outcomes in preterm infants after discharge from the neonatal intensive care unit (nicu): a systematic review. newborn & infant nursing reviews. june 2013 2013;13(2):87-93. 3. samara m, johnson s, lamberts k, marlow n, wolke d. eating problems at age 6 years in a whole population sample of extremely preterm children. dev med child neurol. oct 13 2010;52(2):e16-e22. 4. thoyre s. feeding outcomes of extremely premature infants after neonatal care. journal of obstetric, gynecologic, & neonatal nursing. 2007;36(4):366-376. 5. ludwig s, waitzman ka. changing feeding documentation to reflect infant-driven feeding practice. newborn and infant nursing reviews. 2007;7(3):155-160. 6. thoyre s, park j, pados b, hubbard c. developing a co-regulated, cue-based feeding practice: the critical role of assessment and reflection. j neonatal nurs. aug 2013;19(4):139-148. 7. ross es, philbin mk. soffi: an evidence-based method for quality bottle-feedings with preterm, ill, and fragile infants. journal of perinatal and neonatal nursing. 2011;25(4): 349-357. 8. als h. reading the premature infant. in goldson e (ed.) nurturing the premature infant: developmental interventions in the neonatal intensive care nursery. new york: oxford university press. 1999: 18-85. 9. nyqvist kh. lack of knowledge persists about early breastfeeding competence in preterm infants. j hum lact. aug 2013;29(3):296-299. state of the science: feeding the fragile infant the nidcap federation international presents a one day conference nidcap: developmental care for nicu infants and families from admission through discharge april 29, 2016, 8:00-4:30 pm abington hospital — jefferson health abington, pennsylvania continuing education credits offered to nursing, occupational and speech-language therapy, and psychology. for meeting details and registration please visit www.nidcap.org http://nidcap.org/en/about-us/one-day-conference-abington-pa-29-april-2016/ developmental observer • 2016 • 9 introduction the prognosis of premature children is associated, partly, to successful early extubation. to achieve early extubation, infants should be in the best possible condition. there is proven evidence that kangaroo care (kc) reduces stress in preterm infants and therefore could increase the success of an extubation carried out in kangaroo care. the hypothesis of this work is that kc extubation does not generate more reintubation rate and can reduce the stress of the infant at the time of extubation. objective assess the feasibility and safety of extubation versus conventional method kc incubator. material and methods pilot study. randomized clinical trial. the study was conducted during the months of november and december 2014. eligible infants included those born between ≤1500g and/or <32 gestational age who required mechanical ventilation. infants whose parents agreed to participate in the study were previously randomized into two groups: kc extubation and conventional extubation. all infants were given doses of caffeine prior to extubation and the same action protocol was followed. information about oxygen saturation and heart rate were collected. results during this period there were 17 eligible infants. twelve parents agreed to have their infant included in the study and were randomized. two cases were excluded after randomization as the parents were not present at the time of extubation. finally, out of the 10 cases analyzed, five were extubated during kc (average gestational age 29.07 ± 1.8 and average weight 948.29 ± 250.48) and five inside the incubator (average gestational age of 28, 27 ± 1.8 and average weight 948.43 ± 181.72). reintubation rate in the first 24 hours was 0% in both groups. 60% of the patients extubated through kc needed fi02 post-extubation in the first hour, and 80% of those extubated conventionally. the heart rate decreased 0.4% after extubation through kc compared with an increase of 5.9% in the incubator extubation. conclusions it appears that kangaroo care extubation is feasible and does not increase the risk for the infant. it appears that kc could provide greater comfort. this data will be the starting point for a clinical trial that will include a larger, multi-center sample design. references 1. latini g, de felice c, giannuzzi r, del vecchio a. survival rate and prevalence of bronchopulmonary dysplasia in extremely low birthweight infants. early human development. 2013 jun; 89 suppl 1:s69-733. 2. charpak n, ruiz jg, zupan j, cattaneo a, figueroa z, tessier r, cristo m, anderson g, ludington s, mendoza s, mokhachane m, worku b. kangaroo mother care: 25 years after. acta paediatrica. 2005 may; 94 (5): 514-22. review. pubmed pmid: 16188735. 3. gazzolo d, masetti p, meli m. kangaroo care improves post-extubation cardiorespiratory parameters in infants after open heart surgery. acta paediatrica. 2000; jun; 89 (6): 728-9. pubmed pmid: 10914972. 4. gale g, frank l, lund c. skin-to-skin (kangaroo) holding of intubated premature infant. neonatal network. 1993; 12 (6): 49-57. 5. wallace j, ridpath-parker j. kangaroo care. quality management in health care 1993; 2 (1): 1-5. 6. ludington-hoe s, ferreira c, swinth j, ceccardi j. safe criteria and procedure for kangaroo care with intubated preterm infants. journal of obstetric, gynecologic, & neonatal nursing. 2003; 32(5):579-588. 7. macedo ec, cruvinel f, lukasova k, d`antino me. the mood variation in mothers of preterm infants in kangaroo mother care and conventional incubator care. journal of tropical pediatrics. 2007; 53 (5): 344-6. 8. fischer cb, sontheimer d, scheffer f, bauer j, linderkamp o. cardiorespiratory stability of premature boys and girls during kangaroo care. elsevier early human development. 1997; 52 (1998): 145-153. 9. gazzolo d, masetti p, meli m. kangaroo care improves post-extubation cardiorespiratory parameters in infants after open heart surgery. acta paediatrica. 2000; 89:728-9. statement of financial support maría lópez, eva fuentetaja, juliana acuña, beatriz bellón, carmen maillo, carmen peña have no financial relationships with commercial entities to disclose. a pilot study: randomized clinical trial: kangaroo care extubation maría lópez, eva fuentetaja, juliana acuña, beatriz bellón, carmen maillo, carmen peña neonatal unit, 12 de octubre hospital madrid, madrid, spain royal hotel carlton via montebello 8 bologna, italy, 40121 hosted by the italian modena nidcap training center october 26-29, 2016 10 • 2016 • developmental observer key words: primary care model, developmental care, nicu background premature infants, and infants with congenital defects, represent a fragile and vulnerable patient population whose survival is largely dependent on the provision of expert holistic nursing care.1 the delivery of care in the newborn intensive care nursery (nicn) relies on a number of factors among which are staff experience, education levels and staffing ratios. systems of nursing care delivery have historically evolved based upon economic issues (great depression), political issues (wars), a change in social consciousness (1960’s & 1970’s) and a move towards healthcare as a business model.2 primary nursing care model’s emerged in the 1960’s with a focus on a one to one, patient and family centred relationship that promotes continuity of care.3 it was viewed as means by which consistent care could be applied in the clinical setting with autonomy from the nurse to plan, organize, implement, coordinate and evaluate care in collaboration with the patients and their families.2 consistency of nursing caregivers utilizing a primary care model in one study served as a powerful mediator of length of stay, and duration of mechanical ventilation, supplemental oxygen therapy and parenteral nutrition.1 within the context of nidcap, the use of nursing care delivery models that promote collaboration, communication and continuity of care, appears to support the achievement of individualized development goals. during the implementation of the nidcap advanced practicum (ap), the direct observation of the infant’s interactions with their caregivers provided an opportunity to review the infant’s responses in a setting of familiar (primary care team members) and unfamiliar (nonprimary care team members) caregivers. a comparison of the infants’ responses to differing models of care was undertaken. objectives the objectives of this session were: • to demonstrate the benefits of a primary care nursing model within a nidcap advanced practicum; • to review the difference in responses to individualized care from an infant’s perspective; and • demonstrate how a primary care model of care improves nursing practice and direct patient care. approach prior to the initiation of the nidcap ap, a primary care team was established. a description of the ap process was sent to members of the multidisciplinary team explaining the ap method and the work required as a member of the primary care team. twenty two registered nurses were recruited to the team that included managers, lactation specialists, nurse practitioners, clinical consultants and clinical nurse specialists. two neonatologists, a surgeon, physiotherapist, occupational therapist and speech therapist formed the remaining team members. during the nidcap ap, primary care team members were provided with a weekly email update to identify the infant’s goals and strategies that supported self-regulation. over time the email evolved to include photographs, as it was felt this was more powerful in demonstrating the individualized approach and responses for this infant. copies of the email updates were placed at the infant’s bedside in a colorful nidcap folder for members of the non-primary care team to have access to this information. sixteen behavioral observations were undertaken in the clinical setting, one approximately each week over a four month period. the infant was observed during caregiving which included endotracheal suctioning, being weighed, diaper changes, x-rays and feeding episodes. instances of patient care were scored on the profile of care components template against a criterion five point likert scale, with specific aspects of direct infant care that were compared between the primary care team and nonprimary care team models. the results are summarised on page 8, scores indicate a mean result. sixty-two percent of the caregiving interactions were provided by members of the primary care team that consisted of nurses, family members and an allocated ward grandmother. differences between the infant’s responses to care which were provided by primary care team and non-primary care team members, were observed across all areas. increased sensitivity in supporting the infant in an individualized manner, based on their current and emerging developmental goals, was observed during interactions with the primary care team. conclusion in this instance, care of the infant by members of an assigned primary care team was more likely to be in tune with the infant’s needs, responses and capabilities. the results of this presentation could be used by clinical settings to explore models of care to support newborns with complex needs in the nicn. utilizing a primary care model of nursing during a nidcap advanced practicum: does it make a difference? one patient’s experience. nadine griffiths1, kaye spence1, joy browne2 1 grace centre for newborn care, the children’s hospital at westmead nsw australia, correspondence: kaye.spence@health.nsw.gov.au 2 children’s hospital colorado, aurora, colorado developmental observer • 2016 • 11 the use of a primary care model has been recommended to the units’ governing multidisciplinary councils. we are currently exploring ways to incorporate the model within expected long term admissions. references 1. mefford lc, & alligood mr. evaluating nurse staffing patterns and neonatal intensive care unit outcomes using levine’s conservation model of nursing. journal of nursing management. 2011; 19, 998-1011. 2. tiedman me & lookinland s. traditional models of care delivery: what have we learned? the journal of nursing adminstration. 2004; 34(6), 291-297. 3. rafferty d. team and primary nursing. senior nurse. 1992; 12(1):31–34, 39. statement of financial support nadine griffiths and kaye spence have no financial relationships with commercial entities to disclose. introduction the transfer of the newborn from the delivery room to the nicu requires an experienced medical team and usually a transport incubator. since 2003, a nidcap family-centered care approach has been implemented at the children’s hospital in toulouse, france. the neonatology and pediatric transport team (samu) and the neonatology team worked together and proposed medical guidelines to transfer the sick or premature newborn in skin-to-skin with the father instead of using the transport incubator. objectives to evaluate the feasibility and safety of the transport of the newborn in skin-to-skin with the father from the delivery room to the nicu. material and methods a prospective observational pilot study was performed from june 2014 to august 2014. newborn babies > 32 weeks and > 1000 grams clinically stable and born at the maternity hospital level iii of toulouse were included. physiological and comfort parameters (dan score) of the newborns were collected during the transfer. a questionnaire to parents and caregivers was also collected and analyzed. results seven newborns were included. there were no incidents during the transfer. heart rate, respiratory parameters and temperature were stable. pain evaluation (dan score) showed a complete absence of discomfort. all parents enjoyed this transport and 6 out of 7 mothers thought that they felt less stress. the nursing and medical staff was positive and wanted to continue this experience. conclusion we showed the feasibility to transfer the newborn in skin-toskin with the father from the delivery room to the nicu. the comfort of the newborn was maintained. the feelings of parents were positive. these guidelines are now implemented in toulouse. the transport of the newborn in skin-to-skin with the father from the delivery room to the nicu is safe f. robert-parra1, h. lopez2, c. tison1, s. paranon1, s. birac1, e. delon3, e. daussac1, c. casper2 1 neonatology and pediatric transport team (samu), children’s university hospital; toulouse, france 2 department of neonatology, children’s university hospital, toulouse, france 3 department of obstetrics, university hospital paule de viguier, toulouse, france 5 3.9 timing & sequence transition facilitation state organization synchrony infant/carer 3.9 4.1 4.0 2.5 3 2.3 2.4 4 3 2 1 0 1= p o o rl y s u p p o rt ed , 5 = w el l s u p p o rt ed primary care non-primary care 12 • 2016 • developmental observer background newborn care units are technological environments designed to care for tiny and sick infants. in such situations, families struggle as they cope with parenting their infants, not feeling like real parents and hesitating to become involved in care. the extent and the perception of parents’ engagement in care processes has not yet been assessed in france. objective to describe parental perceptions concerning their participation in the care of their infant, hospitalized immediately at birth in a neonatal unit. design/methods an anonymous online survey was designed by a french national group of neonatal health care professionals and parents conducted between february and august 2014. the survey was intended for parents after their infant’s hospital discharge. thirteen items out of 220 concerning parental perception of their participation in care of their hospitalized infant were analyzed and are presented here. results the questionnaire was completed by 1500 parents from 262 neonatal units all over france. the mean gestational age of the infants was 32 weeks and the mean birth weight was 1600 grams. ninety-eight percent of the respondents were mothers. most parents (85%) said that they were encouraged to participate in the care of their baby. twenty percent of the respondents reported that they did not feel like a real parent and 15% felt judged by nurses. concerning the first time they had taken part in the caring of their child, 15% described joy or pride, 33% anxiety, fear or sadness. thirty percent of parents reported not to have given oral medication during the hospital stay although they considered themselves capable. concerning skin-to-skin care, 20% reported having no information about its benefits, and 15% reported it had never been proposed during the hospital stay. among the parents who had practiced skin-toskin care, 30% described it as stressful and frightening, mostly because they felt lonely. conclusions results of this survey show that first time parents who take part in the caring of their hospitalized newborn felt it very stressful. parents usually feel supported by health care providers but also judged or not often encouraged to do simple caregiving activities for which they felt capable. skin-to-skin care remains inadequately offered and/or supported. parental perception of their involvement in the care of their children in french newborn units: a national web-based survey charlotte casper1, odile dicky1, laurence caeymaex2, madeleine akrich3, anne evrard3, audrey reynaud4, charlotte bouvard4, pierre kuhn5 1 department of neonatology, children’s university hospital, toulouse, france 2 department of neonatology, chic, créteil, france 3 collectif inter associatif autour de la naissance (ciane), france 4 sos préma, france 5 department of neonatology, university hospital, strasbourg, france is there a place for infant massage within a developmentally supportive framework of care? nadine griffiths and kaye spence grace centre for newborn care, the children’s hospital at westmead, nsw, australia, correspondence: kaye.spence@health.nsw.gov.au key words: massage, infant massage, nicn, developmental care background infant massage in the newborn intensive care nursery (nicn) remains one of the most researched interventions currently in practice. it has been studied in the nicn for over 35 years. current research has explored the benefits of massage in premature infants from a brain maturation perspective, attachment formations, weight gain, feeding tolerance, visual development, and short and long term outcomes perspective.1, 2, 3, 4,5 yet, the existing massage research that is implemented in an nicn setting, is methodologically limited (e.g., small sample sizes, differing research protocols and unclear operational definitions). developmental observer • 2016 • 13 this limits the ability of current research findings to inform clinical practice.6 why then does massage continue to be researched in the nicn population? in the premature infant the skin is considered a neurodevelopmental boundary with the stratum corneum, a smart material that interfaces between the brain and the external environment, due to shared embryological origins.7 massage and touch in premature infants is viewed as a way of mediating the development of the central nervous system that would otherwise occur in utero. massage is placed within a positive touch framework, a buffer between the routine caregiving touch provided by health care professionals and the nicn environment. yet these fragile premature and high risk infants may react to touch with physiologic, motor and state compromise.8 we are left with a number of questions to consider when reviewing touch and massage: • how much touch is too much or too little? • what are the alternatives, and who should be providing the touch? • does parent led massage have a place in the nicn? objectives • explore the research driven impetus for infant massage in the nicn; • investigate how massage might be considered a component of developmental care, which is both an individualized and parent/family-focussed approach to care; and • describe how positive touch is implemented within a clinical practice framework from a unit and country perspective. approach in early 2015, two nidcap certified registered nurses presented a proposal to the governing body of their nicn. this proposal recommended training in infant massage to explore its potential use in the nicn. the patient population identified to receive infant massage were long term nicn admissions and their families, as well as infants with gut motility issues following surgery. following the completion of infant massage training and a broad review of the available literature, newborns with gut motility issues following surgery, were excluded due to potential patient risks. three families were invited to participate in a five week trial infant massage program; all accepted. the infants were all >44 weeks gestation when the program began. to participate in the program all infants were required to be at least six weeks post surgical intervention. two infants were treated in the nicn for complex cardiac conditions, and one ex 27 week premature infant, with chronic lung disease and bowel resection from necrotizing enterocoloitis (nec). sessions were conducted by the infant massage instructor with the family. prior to beginning the program, all families were provided with information on how to introduce touch to their infants. families were instructed on how to utilize touch and still-holding each day for one week. they evaluated their infants’ response to touch and met with the instructor to determine if their infant was ready to proceed with the five week course. the program consisted of sessions that addressed: 1) infant behavioral cues, 2) still-holding and containment, 3) demonstration of strokes and techniques, and 4) specific modifications that were offered to their infant. the instructor utilized a demonstration doll throughout the sessions, never touching the infant to avoid interfering with the developing relationship between the infant and his/her parents. at the end of the five week program, parents reported they that they “learned to read his cues;” that the program was “adaptable to my individual baby’s needs;” and “i learned how to read his facial cues and body language.” all parents felt that the program had helped to increase their confidence in interacting with their infant. the instructors noted that conducting the program required a large degree of flexibility and personal commitment in order to incorporate the program in their existing workload. they found they were frequently approached by members of the multi-disciplinary team and parents interested in learning about massage. both instructors remain conflicted about the place for massage in the nicn. within the context of this trial, parents identified the process as both individualized and family-centred. the continuation of the program, however, would be resource intensive, with the outcomes identified by the families and not specifically aligned with the current research priorities in infant massage. both of the instructors have recommended a shift in focus to implementing a positive touch protocol both locally and nationally.9 one of the instructors recently was an invited presenter at australia’s annual neonatal nursing conference. in this setting a discussion on infant massage, its history, the research and the apparent drive to prove massage has a place in the nicn took place. recommendations have been made and accepted by the australian college of neonatal nursing (acnn) that a position statement regarding infant massage in the nicn be developed. within this statement, it is recommended that massage, if practiced in the nicn, is only to be undertaken by parents, and not health care professionals. the acnn has also agreed to the national development of a policy on positive touch in the nicu, this will be developed in collaboration with its developer in the united kingdom.9 conclusion infant massage continues to be practiced in the nicn despite issues with the evidence-based nature of this research. nidcap professionals are in a unique position where they can focus the investment of touch research and clinical practice back to benefit the individual infant and their family. references 1. guzetta a, d’acunto mg, carotenuto m, berardi n, bancale a, biagioni e, boldrini a, ghirri p, maffei l & cioni g. the effects of preterm infant massage on brain electrical activity. developmental medicine & child neurology. 2011; 53 (suppl.4): 46-51. 2. gurol a & polat s. the effects of baby massage on attachment between mother and their infants. asian nursing research. 2012; 6: 35-41. 14 • 2016 • developmental observer 3. field t, diego m & hernandez-reif m. potential underlying mechanisms for greater weight gain in massaged preterm infants. infant behavior and development. 2011; 33 (3): 383-389. 4. tegunduz ks, gurol a, apay se & caner i. effect of abdomen massage for prevention of feeding tolerance in preterm infants. 2015; italian journal of pediatrics. 49 (89). online. 5. abdallah b, badr lk & hawwari m. the efficacy of massage on short and long term outcomes in premature infants. infant behavior and development. 2013; 36: 662-669. 6. vickers a, ohlsson a, lacy j, & horsley a. massage for promoting growth and development of preterm and/or low birth-weight infants. cochrane database of systematic reviews. 2004; 2. art. no.: cd000390. doi: 10.1002/14651858.cd000390.pub2. 7. hoath sb. the skin as a neurodevelopmental interface. neoreviews. 2001; 2: e292e 301. 8. browne jv. considerations for touch and massage in the neonatal intensive care unit. neonatal network. 2000; 19 (1): 61-64. 9. bond c. positive touch and massage in the neonatal unit: a british approach. seminars in neonatology. 2003; 7: 477-486 statement of financial support nadine griffiths and kaye spence have no financial relationships with commercial entities to disclose. introduction prematurity is a risk factor for both the neurodevelopment of the child and for supporting parenting competence. in spain, there is hardly any information available on the impact on the attachment in premature children. objectives • assess the pattern of attachment at 22/24 months of corrected age in children ≤ 1500 g <32 weeks gestational age at birth (ga). • analyze the relationship between the pattern of attachment and the neurodevelopment at 22/24 months corrected age. material and methods prospective study of two cohorts of <32 weeks or ≤ 1,500 g born in 2012 in two level iii-c neonatal units. the attachment pattern was analyzed by the strange situation (ainsworth et al. 1978), a semi-structured laboratory situation that analyzes the interactive behaviors between the child and the primary caregiver. the interactions are classified into three patterns of attachment: safe (b): identified as the child’s confidence in the availability of the attachment figure; avoiding (a): the attachment figure is not available; and resistant/ambivalent (c): the child learns that the availability of the attachment figure is unpredictable. all the assessments were recorded on video with the parents consent. the childrens’ development was assessed through the administration of the bayley scales of infant development iii (2005). results the study monitored 62% of the study population (123/199). the weight of the evaluated children was 1149 ± 285 versus 1246 ± 300 (p = 0.03) of the non evaluated. some differences were also in the length of stay: 61.2 ± 31.1 days in the evaluated versus 50.1 ± 28.3 for the non evaluated (p = 0.003), and the presence of twins: 57 (46.3%) in the evaluated versus 23 (30.3%) in the nonevaluated (p = 0.02). the average ga of the evaluated children was 29.5 ± 2.3 weeks. regarding the quality of attachment, 64.1% of the children showed secure attachment (b); 23.1% showed a pattern of resistant attachment (c) and 12.8% were classified as avoidant (a). there were no differences in newborn characteristics depending on the type of attachment among children except in the case of those with parents with spanish nationality: 88% of the children with a spanish father showed secure attachment versus 69% in the other types (p = 0.01); 84% of the children with spanish mother showed secure attachment versus 66.7% in the other types (p = 0.03). the children with secure attachment (b) had a bayley test (cognitive development) of 107.6 ± 16 versus 98.8 ± 18.8 (p = 0.007) in the case of children with other types of attachment. significant differences were found between secure attachment patterns (b) vs. avoidant (a) in all development subscales (p <0.017). with regard to the cognitive development, children with secure attachment (b) had a bayley test score of 107.6 ± 16 versus 90 ± 18.8 in (a) (p = 0.005); regarding language development (b) was 98 ± 80 versus 13.8 ± 18.8 in (a) (p = 0.005). furthermore, the (b) motor development was 13.8 ± 98 versus 80 ± 18.8 in (a) (p = 0.003). some differences were also found between attachment patterns a and c in relation to the language subscale: 80 ± 18.8 in (a) versus 97.6 ± 17.2 in (c) (p = 0.003). conclusion our study shows that most children under 1500g or less than 32 weeks develop a secure attachment. secure attachment pattern occurs most often when the child’s parents are born in spain (country where the study was conducted). quality of attachment in children < 32 weeks or ≤ 1500 grams at two years corrected age maría lópez maestro1, purificación sierra garcía2, celia díaz gonzález3, mª josé torres valdivieso1, carmen pallas alonso1 1 neonatal unit 12 de octubre hospital, madrid, spain 2 psychology university uned, madrid, spain 3 neonatal unit la paz hospital, madrid, spai developmental observer • 2016 • 15 the study has also found a link between secure attachment pattern and a better outcome in the cognitive development (bsdi iii, 2005). the avoidant attachment is associated with a compromised outcome in all areas of the bayley scales of infant development iii. references 1. van ijzendoorn mh, schuengel c, bakermans-kranenburg mj. disorganized attachment in early childhood: meta-analysis of precursors, concomitants, and sequelae. devlopmental psychopatholgy. 1999; 11 (2): 225-49. 2. brisch kh, bechinger d, betzler s, heinemann h, kachele h, pohlandt f. attachment quality in very low-birthweight premature infants in relation to maternal attachment representations and neurological development. parenting science practice. 2005; 5:311–31. 3. easterbrook m. quality of attachment to mother and father: effects of perinatal risk status. child development. 1989; 60: 825–31. 4. goldberg s, perrotta m, minde k, corter c. maternal behavior and attachment in low-birthweight twins and singletons. child development. 1986; 57: 34–46. 5. wolke d, eryigit-madzwamuse s, gutbrod t. very preterm/very low birthweight infants’ attachment: infant and maternal characteristics. archives of disease in childhood fetal and neonatal edition. 2014 jan; 99 (1): f70-5. 6. wille de. relation of preterm birth with quality of mother–infant interaction at one year. infant behavioral development. 1991; 14: 227–40. statement of financial support maría lópez maestro, purificacíon sierra garcía, celia díaz gonzález, m. josé torres valdivieso, carmen pallas alonso received financial support from koplowitz foundation. purpose although benefits of skin-to-skin contact (ssc) are well documented in the literature, practices remain inconsistent. nurses report knowledge about ssc, however confusion still exists regarding safety and appropriateness. the purpose of this study was to examine the knowledge, beliefs, attitudes and reported practices of perinatal nurses regarding implementation of ssc with the parent/infant dyad. this study explored nurses age, years of experience, primary work setting and education levels in relationship to nurses’ ssc perceptions and reported behaviors to identify knowledge-practice gaps. methods a descriptive cross-sectional online survey design was used. an email with a link to an anonymous survey was completed by 101 perinatal nurses from the northeastern united states. the survey had 35 questions related to nurses’ knowledge, attitudes, beliefs and their perceptions of ssc guidelines and protocols. the instrument’s construct validity was established using principal component analysis with alpha reliability of .79-.90. the survey contained four constructs or dimensions; ssc implementation, ssc knowledge, ssc attitudes and beliefs and ssc education and training. there were six additional demographic questions on the questionnaire to identify participants’ race, gender, age, education level, years of experience, and primary practice setting. the spss statistics version 22 was used for data analysis. descriptive statistics and one way analysis of variance (anova) were used to describe and compare nurses’ responses. results the majority of nurses surveyed strongly agreed that it is nurses’ responsibility to advocate for ssc. significant differences (p<0.01) in provision of ssc with eligible infants between nurses within and between practice settings, education levels, years experience and age differences was found. more highly educated nurses responded they had not received adequate education during orientation (p<0.002). education level significantly influenced attitudes and implementation of ssc, nurses’ perception and beliefs about how difficult it is to initiate ssc changes were affected by years of nursing practice (p<0.04). nurses’ attitudes inform practice and influence policy development. positive attitudes or favorable beliefs appear to have a relationship with nurses’ perceptions on implementing ssc and may translate into opportunities for practice change. nurses with less experience perceive parents as having expectations to hold their infant’s ssc. perhaps this was due to benefits of ssc within mainstream media which contributed to these nurses’ perceptions. nurses with higher education levels are more apprehensive about the way infant responses are measured in terms of the appropriate interpretation of the infant’s responses. interpreting accurate infant behavioral responses is imperative to creating an appropriate plan of care for the infant and family. perinatal nurses have many opportunities to influence safe and effective ssc practices. conclusions findings of this survey confirm that perinatal nurses strongly believe in ssc practices and perceive infants are capable of reciprocal responses when held in ssc. nurses agreed that parents perinatal nurses’ attitudes, knowledge and practices of skin-to-skin contact dorothy vittner1, xiaomei cong1, susan m. ludington-hoe2, jacqueline m. mcgrath1 1 university of connecticut school of nursing, storrs, connecticut 2 case western reserve university, cleveland, ohio 16 • 2016 • developmental observer are emotionally affected by the stress their infant experiences. perinatal nurses continue to have educational needs pertaining to the physiologic effects of ssc on the infant to understand the appropriate use of ssc. a perinatal nurse’s years of experience and primary practice setting appear to have influence on their knowledge of ssc. nurses’ education levels appear to influence implementation of ssc. younger nurses with less experience and less education find it difficult to initiate ssc changes on their units indicating a need for collaboration and mentorship with more experienced and educated nurses. education levels, primary practice settings and years of practice appear to influence nurses’ implementation of ssc. statement of financial support dorothy vittner, xiaomei cong, susan m. ludington-hoe and jacqueline m. mcgrath have no financial relationships with commercial entities to disclose. key words: developmental care, families, support, surgery background developmental care is an approach to individualized care of hospitalized newborns to maximize neurological development and reduce long term cognitive and behavioral problems. the approach is built on developing and supporting relationships between the newborns, their families and staff. while advances in perinatal care have resulted in decreased mortality rates, morbidity rates remain significantly high. in addition to cerebral palsy, hearing loss, visual impairments and developmental delay, long term follow up studies have identified other important neurosensory impairments that may not become evident until preschool or school age such as cognitive and behavioral problems. critical periods of brain development happen in the third trimester of fetal development where there is a period of rapid brain growth, and environmental influences such as noise or handling may impact the developing brain. modifications to the nursery environment and care practices that may reduce morbidity can easily be implemented. the newborn intensive care environment with its technology and task-oriented interventions can cause additional stress to the infant and family, compromising the infant’s physiological and behavioral stability. sick newborns who require surgery are at risk of stress and developmental compromise. developmentally supportive individualized care was implemented as a model of practice into the surgical nicu in a children’s hospital. while there are physical constraints of the nursery environment and design, several components of a developmental care model can be implemented to facilitate a developmentally supportive environment for the parents and their infants in the hospital nursery. objectives • to describe the strategies used in implementing the support framework for a developmental care model in the surgical nicu. • to match these strategies to standards within the nidcap nursery assessment and certification program (nnacp). approach components of developmentally supportive individualized care were introduced over several years based on previous experiences using the evidence from the literature. a multi-disciplinary developmental team was convened to oversee the model and to provide expertise for implementing the various components (14-a). a continuum was used commencing in the antenatal period with tours of the unit and written information for families explaining the model of developmentally supportive care used within the grace centre for newborn care (111-c). the strategies continue through to discharge and the follow-up developmental clinic (1v-d). parents are actively involved in their infant’s care as well as recommendations for functioning of the unit through a parent advisory council (111-a,b, f). early neurological assessment (1v-d) on the unit utilizes the ‘general movements assessment’, which is a non-invasive approach that does not require handling, and can be timed to coincide with routine cares, minimising disruption to infants’ sleep routines. individualized care strategies include developmental rounds (11-c), baby diaries, parent cot-side folders, skin-to-skin support, breastfeeding targets, feeding plans, cot-side developmental dots, pain reduction and management strategies (11-b, c, d, e). specific care practices include quiet time, music therapy, cue-based care-giving, and parent education on positive touch, handling and positioning and parent-drop-in teaching sessions (1v-b). new staff are introduced to developmental care through extended orientation program containing study days and clinical support from the developmental team (1v-a). nidcap model of behavioral observations provide a focus for long-stay newborns following surgery for structural abnormalities (1v-a). a developmental care strategy in a surgical nicu kaye spence, nadine griffiths, cathryn crowle, helen mercieca, gabrielle kerslake, jane pettigrew, michelle juarez, alison loughran-fowlds, susan clarke, angela casey grace centre for newborn care, sydney children’s hospitals network – westmead, nsw australia. correspondence: kaye.spence@health.nsw.gov.au developmental observer • 2016 • 17 conclusion a structured individualized developmentally supportive program can provide a supportive framework for parents and staff in implementing caregiving interventions in the surgical nicu. newborns who require surgery are often late preterm or term who are at risk of compromise due to the operation, anaesthetic and post-operative pain. the nidcap nursery assessment and certification program (nnacp) standards are a useful guide to match and guide the innovations of a specific unit based model of developmentally supportive individualized care. references 1. robison l. an organizational guide for an effective developmental program in the nicu. journal of obstetric, gynecologic, & neonatal nursing. 2003; 32, 379–386. 2. pierrat v, goubet n, peifer k, sizun j. how can we evaluate developmental care practices prior to their implementation in a neonatal intensive care unit? early human development 2007, 83, 415–418. 3. white rd. the sensory environment of the nicu: scientific and design-related aspects. clinics in perinatology. 2004; 31:1-393. 4. warnock f, castral t, brant r, sekilian m, leite a, de la presa owens s, scochi c. brief report: maternal kangaroo care for neonatal pain relief: a systematic narrative review. journal of pediatric psychology. 2009 pp. 1–10. 5. svensson k, velandia m, matthiesen a, welles-nyström b, widström a. effects of motherinfant skin-to-skin contact on severe latch-on problems in older infants: a randomized trial. international breastfeeding journal. 2013, 8:1. 6. smith k, buehler d, als h. nidcap nursery certification program (nncp) nursery assessment manual. nidcap federation international 2011, boston. statement of financial support kaye spence, nadine griffiths, cathryn crowle, helen mercieca, gabrielle kerslake, jane pettigrew, michelle juarez, alison loughran-fowlds, susan clarke and angela casey have no financial relationships with commercial entities to disclose. sonicu, an industry leader in neonatal intensive care unit sound level monitoring, once again takes a leading role in newborn intensive care unit (nicu) advances by supporting nidcap federation international, inc. (nfi) as the organization’s first corporate sponsor. sonicu pioneered nicu sound monitoring in 2008 at st. vincent hospital in indianapolis, ind. since that time, the company has been refining and expanding its healthcare capabilities to create a safe healing environment for newborns needing intensive and specialized care. “sonicu was formed to improve the nicu environment,” said sonicu ceo nick tuttle. “it was more than a business model; it’s what we did. it was personal and it was our passion. we are proud to continue that mission by sponsoring the nfi and its groundbreaking work to educate and advance individualized newborn nicu care.” the nfi has been promoting the philosophy and science of nidcap (newborn individualized developmental care and assessment program) for nearly 30 years. as worldwide preterm births increase, nidcap focuses on individualized care that supports development, minimizes stress, and utilizes a relationshipbased, family-integrated approach. “the nidcap federation international is pleased to welcome sonicu as our first corporate sponsor,” said deborah buehler, phd, nfi vice president for organizational advancement. “sonicu’s support will help us raise global awareness of the need for nidcap care and will enhance opportunities to develop educational programs to broaden the reach of this care to ever more nicu professionals and the ‘preterm families’ they serve. together we will share the privilege to be the voice of the newborn” dr. buehler said. based in greenfield, ind., sonicu offers healthcare’s first system-wide solution for environmental monitoring. sonicu’s patented wireless sensors and web-based infrastructure provide an easy to implement and scalable platform to accommodate healthcare facilities and systems of any size. sonicu solutions also work independently or in conjunction with existing it systems (info@sonicu.com). media contact: nick tuttle, ceo, sonicu www.sonicu.com; office: (317) 468-2345; cell: (317) 409-6321 sonicu signs as inaugural nidcap federation international corporate sponsor “sonicu’s support will help us raise global awareness of the need for nidcap care.” — deborah buehler, phd nfi vice president for organizational advancement 18 • 2016 • developmental observer the nfi is pleased to welcome its first corporate sponsor, sonicu, as well as its second corporate sponsor, dr. brown’s. the generous support of these sponsors will help the nfi raise global awareness of the need for nidcap care and will enhance opportunities to develop educational programs to broaden the reach of this care to more and more nicu professionals and the ‘preterm families’ they serve. sonicu is recognized as a leader in nicu monitoring technology. sonicu’s mission to measure and monitor is rooted in the passion to protect and the desire to create a safe, healing environment. for decades, parents have relied on dr. brown’s® products to make sure their babies receive the best nutrition from the start, including longtimefavorite natural flow bottles that help reduce feeding problems like colic, spit-up, burping and gas. now, the new dr. brown’s® medical product line extends the same dr. brown’s® healthy benefits to families with babies who have feeding issues, in addition to the medical professionals who play a critical role in infant development. our sponsors operationalizing trauma-informed care in the nicu: informing our developmental care practice of the future presented by the cincinnati children’s hospital nidcap training & research center and the children’s hospital at the university of illinois nidcap training center april 21, 2016 & april 22, 2016 cincinnati children’s hospital medical center cincinnati, ohio, usa click here for conference brochure conferences endorsed by the nidcap federation international, inc. the sooner nidcap training center at ou health sciences center celebrates 30 years of nidcap developmental care supporting family-focused developmentally appropriate care in special care and newborn intensive care nurseries at the children’s hospital and ou medical services samis education center friday, may 27, 2016 9:00 am to 4:00 pm http://nidcap.org/wp-content/uploads/2014/05/nfi-endorsed-midwest-developmental-care-conference-brochure-final-read-only.pdf developmental observer • 2016 • 19 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery assessment and certification program (nnacp) the nidcap nursery assessment and certification program (nnacp) provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. external review and validation by the nfi may be sought when a nursery feels it has achieved this goal. successful nidcap nursery certification, the ultimate goal, denotes distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment. nurseries that have achieved this recognition serve as a model and an inspiration to others. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nnacp director at: nnacpdirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve mission the nfi’s mission is to promote the advancement of the philosophy and science of nidcap care and to assure the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, may 1, 2015 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship-based, family-integrated approach. adopted by the nfi board, may 1, 2015 20 • 2016 • developmental observer developmental observer nidcap federation international board of directors and staff 2015–2016 the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president gretchen lawhon, phd, rn, cbc, faan nidcap master trainer email: premieg@gmail.com vice president for administration james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org vice president for organizational advancement deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary kaye spence children’s hospital at westmead westmead, sydney, australia email: kaye.spence@health.nsw.gov.au jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center rita cummings, ma vice president–operations san francisco zen center mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: kathy.vandenberg@ucsf.edu rodd e. hedlund, med director nidcap nursery assessment and certification program nidcap trainer email: nnacpdirector@nidcap.org sandra kosta, ba financial operations and administration director email: sandra.kosta@childrens.harvard.edu http://nidcap.org/en/nfi-news/developmental-observer-the-official-newsletter-of-the-nfi/ developmental observer • 2016 • 21 nidcap on the web to learn more about the nfi and its programs please visit us at www.nidcap.org please visit the nfi’s youtube channel to watch videos about nidcap (in 13 languages) and the nnacp. www.youtube.com/user/nidcapfi the nfi is pleased to offer our nidcap blog, with observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. follow us on all of our social media platforms: like us on facebook follow us on twitter follow our posts on pinterest connect with colleagues on linkedin watch our videos on you tube read and participate on our nidcap blog https://www.facebook.com/nidcap https://twitter.com/nidcap https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international https://www.youtube.com/user/nidcapfi http://nidcap.org/blog/ http://nidcap.org/blog/ https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international www.nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: kathy.vandenberg@ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, med contact: windy crow email: stjosephnidcap@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: hanne.aagaard@skejby.rm.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt nidcap germany, nidcap training center tübingen, tübingen, germany universitätsklinik für kinderund jugendmedizin director: christian poets, md phd contact: natalie broghammer, rn email: natalie.broghammer@med.uni-tuebingen.de become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment http://nidcap.org/en/about-us/membership-overview/ in november 2012 i had the privilege of facilitating a session on “a bird’s eye view: what parents experience in the nicu” as part of the 28th annual developmental interventions of the newborn conference in orlando, florida. at the end of that session a petite young woman came up to talk with me about some of the long term emotional aspects of prematurity. no sooner had holly hearn shared her personal story of prematurity with me than i immediately asked her if she would be willing to share her story in our nfi newsletter. as you read holly’s story, you too will be touched by her unique insight and compassion as a neonatal nurse. –gretchen lawhon some things in life happen by chance. other things in life occur due to choices made after deep thought, or some quickly in time of emergency. it was 28 years ago when the doctor told my parents, “we have to deliver her now. we can’t wait any longer.” soon after, a baby girl who weighed as much as a box of cornflakes at 1 pound, 2 ounces, entered the world at 26 weeks gestation. she was born three months too soon. intubated in the delivery room, my first photo is one with all my extremities flailed out to the sides, before being whisked to the nicu down the hallway. there i began what would be a five and a half month journey, an emotional roller coaster for all of those involved. my parents were allowed to visit for only a short time each day. it was much different than the family-centered care that is practiced now in most newborn intensive care units (nicu). they came every day, and each day they received a photo that was taken of me. from my parents’ perspective, photos not medical information, are what document my journey in the nicu. i began in an open bed with an overhead warmer, with many tubes inserted, and monitor lines attached to my body. there i lay for the world to see, no snugglies or frogs around my tiny body to support my self-regulatory attempts. there was not even a diaper that was an appropriate size. after surviving the first few weeks, i was moved 2013 vol. 6 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international continued on page 2 table of contents voice of the newborn ................................ 1 nidcap training centers from around the world ...................................... 3 family voices ............................................. 4 supporting families .................................. 6 a french experience ................................ 8 current developmental research ........ 10 developmental resources .................... 12 nidcap as a process of creating and sustaining transformations .................. 15 voice of the newborn: a premature infant’s pride and destiny holly hearn, rn “it is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change.” charles darwin 1809-1882 holly in her early days as a premature infant born at 26 weeks. 2 • 2013 • developmental observer into an isolette where the bright lights and loud noises from the lifesaving machines were somewhat decreased by a plastic covering. this is where the most photos were taken of me as i progressed day by day. one day, several months into my stay, i decided i had grown too big for my breathing tube and pulled it out myself. all the staff ran to my bed as the alarms sounded. now, as a nicu nurse myself, i know of the urgency that ensued in the next few moments. my doctor was in the unit when this occurred and he decided not to reintubate me. instead, i was placed under an oxyhood. the doctor warned my parents that there was a great possibility i would need to be reintubated again to support my breathing efforts. however, i progressed on to receiving oxygen from nasal cannula and then finally, i could breathe room air. other challenges such as eating and maintaining my temperature, were also chronicled in photos. although there are photos of my mother giving me my first tub bath as well as bottle feeding me, many of the photos are only of me. my nurses seemed to provide most of the hands on care such as diaper changes, even as discharge approached, due to the visitation rules. after a night of rooming in with my parents, it was finally time to go home. on sept. 15, 1984, i was finally discharged home with a breathing monitor to check my respirations, and two very nervous parents. there was a party for me that many of my nurses attended, even on their day off from work. although i have the best parents, i feel that these ladies were my first “hospital mothers” caring for me when my mother could not. i still keep in contact with one nurse in particular after her son and i were in the same class in school. she beams with pride every time i see her. it is only now that i know that her love comes from a special place as she saw me struggle in my darkest and most critical days of my young life. she has seen me blossom into a young woman filled with life, just as i was during my first few moments of life. i have always known that it is a miracle that i am alive with no major long term problems, resulting from my nicu stay. it wasn’t until several years into my nursing career, that i understood fully the challenges and problems a premature infant faces every day. this had somehow eluded me. there were no intestinal perforations, no brain hemorrhages, pda ligations or chronic lung disease. i was relatively healthy in my childhood and flourished in the classroom. although i was always small for my age, it was never a hindrance and developmental milestones were met. speech therapy was involved, but it was successful because those close to me know i love to talk! i know that the best care that was possible during that time period was provided to me. i am extremely grateful that my doctor, a well-known pediatric cardiologist in his field, had opened the nicu only a few years before my birth in monroe, louisiana. i know the care was the most up to date of that time and it saved my life. i knew that i wanted to work in a nicu since early childhood. my beginning journey in pre-med led me into the nursing field. i was very fortunate to have received a job offer in a level iv nicu at cook children’s medical center right out of nursing school. attending texas christian university in fort worth, i had spent an observation day in the nicu during my pediatric clinical experience. i knew i wanted to be a part of this organization after nursing school. on my observation day, i watched for several hours straight as a team of doctors, nurses and respiratory therapists worked to save the life of a micro-premie, like myself. i knew then that i definitely wanted to join this team of extraordinary people in the nicu. a semi-annual publication of the nidcap federation international © 2013. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer holly caring for premature infants as a neonatal nurse. continued on page 18 developmental observer • 2013 • 3 n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d marla wood, rn, med and bonni moyer, ms, pt arizona has a rich nidcap history, so the opening of the 20th nidcap training center in the world at st. joseph’s hospital in phoenix was greatly anticipated. under the leadership of dr. elsa sell, nidcap blazed a trail into the deserts of the southwestern united states in 1987, with the opening of the saguaro training center at the university of arizona in tucson. after attending a nidcap lecture presented by dr. sell, a program manager at the arizona department of health services (adhs) was moved into action. by 1988, adhs provided financial and administrative support for developmental care projects in the ten nursery icus (nicu) that existed in the state at the time. each nicu identified a developmental coordinator who would embark on a journey toward nidcap reliability. nidcap trainers from around the u.s. flocked to the state to provide this massive training initiative. the coordinators, once reliability was achieved, performed behavioral assessments on the highest risk infants in their units, while providing training for staff and offering support to families. in 1991, the developmental care council of arizona was created by the coordinators of the hospital programs as a way of networking, reflecting, and providing support for each other. meetings of this group occurred every three months and continue today. in 1993, the expansion of nidcap programs into level 2 nicus, that care for premature newborns born 28 weeks and older, was initiated. coordinators in these step-down nicus were hired and they began their journey toward nidcap certification. during this time, adhs also created a developmental care consultant position to provide support and guidance to the developmental coordinators in the state. the council created developmental care guidelines in 1998 and recently revised them in 2012. some key principles in the guidelines emphasize that: 1) developmentally supportive care is mandatory; 2) parents are the most important resource in a child’s life and should be active participants in their care; and 3) all children have intrinsic value and the right to maximize their potential. the nidcap training center in tucson closed in 1997 and soon after, st. joseph’s hospital, phoenix, arizona began to make plans to create the next arizona training center. on march 13, 2012, that goal was realized when st. joseph’s nidcap training center opened with two newly certified trainers, bonni moyer, ms, pt and marla wood, rn, med over eight years ago, sharon glanville, executive director of women’s and children’s services began her commitment in the development of the st. joseph’s nidcap training center. “we realized how important this aspect of care was, and that there were no nidcap training centers nearby, which made it a long and costly process to get the staff certified. with the full support of our executive leadership team, we committed to this journey. we couldn’t be more proud of our nursery icu team and the outstanding care that they provide every day.” in 2005, marla wood was hired to begin the training process to become the first nidcap trainer for arizona’s next nidcap training center. soon after, bonni moyer who at that time was working in the physical/occupational therapy department, began her own journey as a nidcap trainer. throughout the years of their nidcap training, bonni and marla continued their work with the developmental care council, meeting quarterly and identifying the needs of individual hospitals as well as ongoing and new programs developed throughout the state. st. joseph’s hospital is a level iii nursery with a variety of subspecialty staff, including neonatologists, respiratory therapists, occupational therapists (ot), physical therapists (pt), and speech language (slp) therapists who are integrated into the idea of developmentally supportive and family centered care. the developmental team has expanded and strengthened throughout the years. now meeting once a month, the committee consists of nursing staff, a march of dimes representative, families, ots, pts, slps, dietician, social workers, nurse management, neonatologists, grief counselors and a chaplin, as well as the team of developmental specialists and nidcap trainers. this committee has continually accomplished goals to improve the awareness of behavioral cues of the infant and increase family involvement. the therapy team receives orders on almost all the infants, allowing them to assist with fourhanded care during care giving interaction. the input from the family liaison is invaluable, as it allows the team to identify needs from the family perspective and shift things to meet their needs. st. joseph’s hospital in phoenix arizona marla wood, rn, med and bonni moyer, ms, pt. continued on page 18 4 • 2013 • developmental observer marcel panas fa m i ly v o i c e s supporting parents of multiples in the nicu: words of wisdom from a father’s perspective the news of a multiple birth can come as a surprise and is a life-altering event. when confronted with the preterm delivery of twins, the special circumstances associated with their arrival, becomes increasingly complex. marcel panas provides a vivid illustration of the unique challenges that parents of multiples face, while also sharing the insight he gained through his experience in the newborn intensive care nursery, and the lessons he learned from his twins.–debra paul, otr “above all … don’t lose hope” — jann martel, life of pi i am at the final night of prenatal classes being held in the basement of the hospital. i’ve been the only “single dad” there for the past five weeks. my wife, laurina, has been lying practically motionless in a lonely bed a few floors above since week 19 when “baby a” tried to get through a shortened cervix. a voice that i have learned to listen to during the past few weeks of the class, had me leave tonight’s session early. i found a fearful laurina attached to a series of monitors. it’s time. shortly before midnight on november 29, 2006, at 24 weeks and 3 days, alex and andrew panas make their long awaited, yet all too early entrance into this world. i’m introduced to my son, andrew, when he grasps my finger. the doctor asks me to “cut the cord”. having grieved the loss of a “normal” pregnancy, i overwhelmingly welcome a moment to feel like any other new dad should. i push andrew up to the nicu while his team squeezes air into his little lungs. the last vision i have of laurina is seeing her lying in the operating room as the medical team tries desperately to start alex’s tiny heart. organized chaos welcomes andrew and me as we enter the nicu. minutes later, alex is placed in the bed next to andrew. alex’s heart stops again and more compressions start. i’m shocked. frightened. helpless. someone brings me a chair and a glass of water. alex’s heart starts again. after spending a couple minutes with my new family, i take two polaroid pictures of our boys and then take the photos to their mom who is just waking up in the recovery room. through emotions i cannot describe, i can only say “they’re alive. you’re a mom!” it would be days before laurina was well enough to meet the children she had given life to and brought into the world. i wheel laurina so she can see andrew. she reaches through the tiny porthole and takes his hand in hers for the first time. his nurse asks laurina “do you want to hold him?” is this even possible? minutes later, he is placed on her chest. never sure we’d ever get this moment, tears of fear and joy slide down her face as she feels the subtle movements of andrew wriggling on her chest. things go fairly well the first week or so. laurina is still quite ill, so i spend the nights sleeping on the floor next to her hospital bed. in between brief periods of rest, i wash breast pump equipment and deliver milk to the nicu. on day eight we face one of our most serious setbacks. “there has been a change with alex” says his neonatologist. we sit devastated in a dark, grey conference room with his medical team, social workers and spiritual care. alex’s lungs are sick and he is on high frequency ventilation at 100% oxygen. he is paralyzed from the medications. “there is little else we can do medically. we recommend that care be withdrawn.” this alex is cuddled by his father’s hands. “when he couldn’t be held, we made sure he felt our touch as much as possible.” on the day he was “supposed to die,” alex chooses life in the arms of his mother. developmental observer • 2013 • 5 can’t be. he’s alive! we don’t understand! we sob. i hold laurina tight. withdrawing care is something we just can’t be at peace with. “can we let alex decide?” we ask. another physician shares a different, yet equally dire opinion. he asks “has he ever been held?” he hasn’t. he’s been too sick. “you should hold him” the doctor says compassionately. alex’s aunts and grandparents say their good-byes. laurina sits in a chair. as a team of four lift alex from his bed, his breathing quickens and his heart races. they rush to place him on laurina’s chest. i take a quick picture of the three of us …even as painful as this moment is, i tell laurina to smile. this is all we had ever wanted…to be parents and hold our children. within seconds of his mom’s skin next to his, alex’s vitals begin to stabilize. his oxygen requirements steadily decline until they settle at 35%. we hold alex for eight straight hours. we hold him all weekend until we can no longer bear to see the letters “dnr” on his chart. alex had decided. his journey would continue. it was early in our journey when we were introduced to nidcap. i was initially surprised that there was an official acronym for this. shouldn’t responding to their needs and cues just be a natural way of caring for children? i soon learned to appreciate what nidcap meant to the people who practice it and the children and families who benefit from it. holding our boys in kangaroo care was the most special time we spent as a family. when they couldn’t be held, we made sure alex and andrew felt our touch as often as possible …especially during tests and procedures, which we never missed. andrew’s first breaths were taken in the arms of his mother when he was extubated. alex chose life the moment he felt his mother’s embrace. being thrust into the nicu experience is very overwhelming. it’s especially challenging for us dads. we want to fix what’s broken and feel helpless when we can’t. we do want to be part of the day to day care of our children…we’re just terrified. we are the guys talking about the hockey game to another dad …while washing our wife’s breast pump supplies. we are the guys falling asleep on the floor of a hospital room wondering if we’ll make our mortgage payments … but we just cannot leave our family. we feel we are expected to hold ourselves and our families together while the world around us crumbles apart. we appear strong but are the ones crying in a hospital stairwell when no one else is looking. as alex’s health continues to improve, andrew takes a turn for the worse. as we watch the clock ring in a new year above andrew’s bed, his medical team tries to stabilize him. we don’t even leave that floor of the hospital for the next 10 days until he is stable enough to be transferred to another hospital for surgery. we spend countless hours at andrew’s bedside, or waiting outside of the operating room for the results of yet another surgery, test or procedure. after six weeks of our family being separated by the river that splits our city, and our hearts, andrew is reunited with his brother. although 3 ½ months old, we celebrate their “0” birthday party on their due date. this would be the happiest day the four of us would ever spend together. for the first time we allow ourselves the belief and hope that our entire family will all come home one day soon. two weeks later i am awake two seconds before the phone rings. the compassionate voice on the other end says “there’s been a change with andrew, you need to come in.” within minutes we are in the unit looking at our sick little boy. how could this be? he was doing so well yesterday! the doctors can’t explain it. they suggest we transfer andrew back to the other hospital for surgery to see what is happening. without any hesitation i say “we have to stop!” everyone, including laurina, is taken aback by my response. i picture andrew dying all alone in the ambulance on the way to the other hospital. “if he is to die, he should do it here. with his brother. with us. with his family.” seconds later, a nurse walks into the conference room and says “you need to come now”. “give me my boy!” exclaims laurina as we both rush into andrew’s pod. he’s quickly placed in her arms. his medical team keeps him breathing long enough for us to say all we need to say. we tell andrew we love him. we’re proud of him…and he’s our special little boy. yet there never is enough time. you’re always left with words you should have said. i nod to the respiratory therapist to stop squeezing the bag. she steps back with tears streaming down her own face. i take comfort in this. the monitors are turned off. as the leads and tubes are removed, one by one, andrew turns into our perfect little boy. within minutes his breathing fades and his heart stops. he falls asleep forever in his mother’s arms. i’m seated next to them with alex in my own arms. we are surrounded by the rest of his family (of which include not only his aunts and grandparents, but the staff who cared for andrew in the only home he’s ever known). today, alex is an active, happy and healthy six year old who’s left his medical challenges long behind him. he loves to travel the world with his mom and dad. he is curious and adventurous and never short on questions of the world around him …and his brother, andrew. all queries we are only too eager to answer. yet, it is my boys who continue to teach me. they’ve shown me a world of unconditional love, determination and compassion. they showed me how to look for what is possible rather than what cannot be. and above all …they showed me how to never lose hope. soon after alex was discharged from the nicu, marcel panas became the co-chair of the stollery children’s hospital family centered care council and a founding member of the nicu family advisory care team. marcel now currently holds the position of coordinator of family centered care at the stollery children’s hospital in edmonton, alberta, canada. laurina, marcel and alex today. embarking on another adventure! 6 • 2013 • developmental observer anna hall quarles s u p p o r t i n g fa m i l i e s “anna hall quarles has a master’s degree in social work and public health, and was working as a therapist with preschool children and their families before her twins were born at 25 weeks. she and her husband have shared their experiences in a blog that included such thoughtful reflections that melissa johnson asked her to share her thoughts with the readers of the developmental observer. anna’s thoughts about the role of memories and the mix of joyful and painful emotions she experienced after her children went home are particularly relevant to those who work with premature infants and their families both within the nicu and at home.” –melissa johnson, phd after an enjoyable pregnancy, i unexpectedly had to go to the emergency room in the middle of the night. i knew before i got there, that i was most likely not coming home; so i was not surprised when admitted to the hospital that i was immediately placed on bed rest in a room adjacent to the labor and delivery room. i was 24 weeks and 1 day pregnant. almost a week later at exactly 25 weeks i delivered a baby boy and baby girl. jamison weighed 1 pound 11.5 ounces and emma weighed 1 pound 7.5 ounces. jamison and emma’s 105 and 136 days in the hospital are forever a part of who i am. from that point forward our lives have permanently been changed. thus far, our lives have three phases: before the nicu, during the nicu and after the nicu. it is hard to describe how our feelings have evolved since we’ve left the hospital. it’s almost as if each day i am carrying both a special gift and also a deep wound. i feel so much gratitude and happiness to see their smiling faces each morning, yet they can also take me back to the months that i woke up when they were no longer in my belly, but were also not in our home. our life now and then is connected in my head and heart, and is all part of our story as a family. many of us have those moments when we are doing something and then unexpectedly, we are reflecting back onto another memory. for most of my life those intangible connections have been good, however that is no longer the case, since experiencing emma and jamison’s unexpected early births. although time dragged on, or even stood still, while they were in the nicu it was also a very busy time, which did not leave room or energy to process what was going on around me. instead, those feelings were pushed back to make room for others. yet they did not disappear. they are still within me. now that the strain of those early months has passed, those feelings have been pushing their way back to the surface. there are lovely and dreadful examples of how these subconscious connections of the children’s stay in the hospital, come back to me now that we’re all home together. the main culprit of the troublesome thoughts that creep back into my days is breathing. i love to hear, see, feel and yes smell their breaths. but if the rhythm of their breathing shifts even the slightest i cannot help but place my hand on their back and look to see if the color around their eyes has become…now i cannot remember the “term” for the bluish unnatural look that i was told to watch out for during feeding…a sign they are inhaling milk or basically choking. this fear was certainly more powerful when they first came home. many mothers have a worry that their baby may stop breathing, but fortunately only a few have the memory of it actual happening, and what it looks like. the sound of the monitors going off, as the nurse quickly yet calmly scoops your baby out of your arms, firmly rubbing their back as they put them back into their crib to place the “blow by” over their face with extra oxygen. we few carry this as a litmus test for every future breath. with each breath that goes in and out we can exhale, but we can never forget. jeb and anna holding their twins, jamison and emma. developmental observer • 2013 • 7 to say emma and jamison’s hospitalization was hard doesn’t even begin to describe it. so it came to me unexpectedly that even amidst such terrifying and unpredictable days and nights, i also have memories that are powerfully beautiful. shortly after they were born, i resigned from my job aching to do two things and only two things – hold them and pump. delivering at 25 weeks denied me the chance to hold my newborn babies after they were born. it wasn’t until weeks later that i first got that opportunity with my son, and i do not need to look back at the photograph to recall the swirling mix of fear and relief that came with it. i held my daughter two weeks after she was born, for a brief minute as they switched out her ventilator and bed. i am forever thankful for the respiratory therapist who urged and supported me to hold her since he would be doing it otherwise. these were not what i expected my first times holding my babies to be like, but they are memories that i will hold close to my heart forever. during their time in the hospital my new job was to “kangaroo” my babies and i did this for five to ten hours a day. this became one of the few gifts that i could give them and that no one else at the hospital could. it also gave me time to be fully present and take each of them in. emma, even at two pounds, would move her arms and place them just under her chin as she slept on my chest. jamison would wake up, and somehow had the strength to lift his head and look up to me, before collapsing back into sleep. these memories come back almost nightly as they drift into sleep in my arms before bed. jamison’s big body now requires that i lay my cheek on his head while his legs fold up to fit in my lap, and emma’s head perfectly nestles in the space where her entire body once lay. these bedtime moments take me back to the hours of kangaroo care and how far they have come. they also are slowly filling the void of the months and months that i could not put them to bed. these moments are exquisite yet complicated. about four months after they came home neither would settle without being held. i managed to scoop them both up and propped pillows around me. as i sat there, holding them, and they both fell asleep in my arms, i began to cry. within that moment of calm joy, the weight of 30 pounds of babies brought me back to the first time they both were placed on my chest. at that time their physical weight was just less than three pounds combined, yet the weight i was under was almost too much. a handful of our close friends and family still cannot comprehend it all and will supportively say “well thank goodness that’s behind you.” i am glad they have not had this experience to fully understand where we’ve been and where we are now. however for myself or any other parent of a premie i feel the need to speak up. i explain that being the parent to a premie does not mean there is a finish line we cross when they survive or when we get to bring them home. these certainly are two of the biggest achievements, but there is much more ahead, once an infant has been discharged home (for all parents of premies). currently, we are in the throes of more frequent doctors’ appointments (neonatology, nephrology, cardiology, urology, and pediatric surgery), regular ultrasounds, physical therapy evaluations, and rsv shots. we have hardly crossed a finish line, and i never have expected to. even if the tangible aspects of their premature birth pass i know that the emotional memory will remain. and i am starting to be okay with that. i am fortunate that, although a typical day often holds a stomach sinking shadow, there is also a shimmering sparkly milestone. this is hard since the shadows lurk, where you least expect them, but in letting myself cry and reflect on those moments i have found that only brings more light to our successes and blessings. for me being a parent to two preemies has not been a fairy tale, but ours is absolutely a happy story. happy jamison and surprised emma sitting for a photo. jamison held against his mother’s chest for resting and relaxation. 8 • 2013 • developmental observer our son was born 6 years ago at 28 weeks and 4 days. his birth was magical but also brutal and unexpected. however, we have been able to see the magic no matter how stressful the situation was in reality and that is thanks to the teams we met at the port royal hospital in paris. they demonstrated an incredibly high degree of professionalism and dedication. before the birth, they took the time to explain to us what was going on...one day at a time; that was exactly what we needed. after his birth, alex and his mother and father were well cared for. as parents, we have been quickly but efficiently trained by the medical team about the processes, the gestures, the schedules…everything to help us play our role as parents with this fragile but strong and courageous baby. it is never easy to become parents and each person has to develop their own style. being supported through this experience by this highly competent team of medical and nursing professionals was tremendously helpful. the medical team was very positive about our baby, very attentive as well. they always knew how he was doing, and were able to explain to us the different steps of medical and nursing interventions that were needed by alex on a daily basis, and week after week. this team of professionals were also available to listen to and empathize with our emotional responses, as we faced new challenges, while alex was living in the newborn intensive care nursery. for example, bed space was limited at port royal and with alex recovering fast, they had to transfer him to another unit. they told us about this plan and this made us really uncomfortable. we were just starting to adjust to alex’s unexpected birth and they wanted to change everything. the team agreed to delay the transfer and we were quite relieved. one week later we were ready to face this transfer. we actually understood that we were lucky to have this team and that other babies should be able to benefit from this as well. we have been so grateful to the whole team for how much they have done for our baby. we will definitely never forget them. it felt natural to look for ways to show them our appreciation. coming from an international background, we were familiar with how fundraising was a good way to support and communicate about a cause. so my husband decided to realize one of his lifelong challenges (he never did it before and never did it after), run a marathon. he chose the new york marathon. we decided to match any financial contribution that our friends would make to port royal on that occasion. in 2007, this was quite new in france, especially as there was no foundation like premup then, so no tax credit was given, which is a big encouragement for giving in france today. in the end we received large support from our foreign friends and local friends as well. we managed to raise € 20,000, not enough to purchase an incubator, but enough to still make a difference. it is in this context that my husband met with professor jarreau, head of neonatalogy at port royal. having a career in finance, my husband was very keen to understand the financial issues of such a great organization. this is when he heard about nidcap. the amount we were able to raise was enough to train new people in nidcap and improve the care that infants receive from the team. knowing that this money could help other infants have a better experience and help parents to feel more empowered in that situation made us very happy. since then, we have been willing to do more. in the following years, we had two other infants, born at 37 weeks (with cervical stitching managed in port royal). while i was going to my regular check-ups i heard about prem’up, a foundation that raised money for research in neonatalogy at port royal and other institutions. my husband and i were enthusiastic about this initiative. we met with the teams and thought that it would be great to be able to participate in their effort, at our level. we decided to give another € 30,000 from our savings. considering that what made the difference for us was not only the medical follow-up, but also the attention and behavioral coaching. we were happy that those additional funds were used to finance the development of nidcap trainings within port royal. our son is now six years old. he is a fantastic human being, a loving child, a great older brother and a brilliant student. we are grateful everyday to the professionals who helped him get where he is now. we feel responsible to do our best to continue this great work and help other children to benefit from the support we and our children were so lucky to receive. for any parent, the birth of a child is a life-defining moment. a french experience hélène gheysens developmental observer • 2013 • 9 developmental care in the moment a tender moment. photograph by melissa barnes nfi mission statement the nidcap federation international (nfi) promotes the newborn individualized developmental care and assessment program (nidcap). nidcap is the most comprehensive, evidence-based model of developmentally supportive care and assessment for preterm and full-term newborns and their families in the hospital, and the transition home. the nfi aspires for all newborns and families to receive hospital care and assessment in the relationship based, family integrated nidcap model. the nfi assures the quality of nidcap education, training and certification for professionals and hospital systems, and advances the philosophy and science of such care. adopted by the nfi board, april 27, 2013 10 • 2013 • developmental observer parents reading to their infants in the nicu: does it make a difference? background enhancing and supporting parents and their interactions with their child is an essential aspect of providing family-centered developmentally supportive care.1 yet, finding creative ways to enhance this developing relationship in the chaotic environment of the newborn intensive care unit (nicu) is often challenging. although the environment of the nicu is evolving into a quieter and calmer place, there are still times when the chaos increases the anxiety of the most experienced health professional; let alone the frightened new parent. adding auditory interventions to this environment may not be something to consider for the vulnerable high risk infant, yet should we be overlooking interactive opportunities that would enhance the developing parent-child relationship while at the same time promoting the child’s long term cognitive development? research on the use of the mother’s voice as an intervention has been explored for some time with mostly promising outcomes,2 however, finding ways for the mother to feel more comfortable talking to her child in the nicu with everyone “watching on,” can sometimes make supporting this positive intervention stressful for everyone involved. objective i am sure that we would all agree that supporting parents and the developing relationship with their child during the crisis of neonatal intensive care is, without doubt, of critical importance. how can we foster this developing relationship without adding stress for the vulnerable infant given the intensity of the environment? it is my premise that parents want to interact with their child but often feel uncomfortable doing so. parents report feeling very out of place in the nicu, and that the environment is not conducive to “normal parenting”.1 routine parent reading to full-term infants has been found to foster the parent-child relationship in early infancy with long lasting cognitive effects for the child.3-5 the question that is the basis for this review is: “what is the potential for use of this intervention with parents and infants in the nicu?” methods a search of the recent literature in pubmed and cinahl for studies particularly related to parents reading to infants in the nicu was used to support the recommendations for practice from this review. this review is not considered to be comprehensive and represents the findings of only a few recent studies. the framework for this review rests on the foundation provided to us by dr. als.6 early experiences are the experiences for which all later experiences are based upon. early experiences change how the brain develops and provide the foundation and structure for later cognitive development. summary of evidence the findings of two studies are highlighted in this review. both are studies about parent reading in the nicu. jones and englestad (2004) developed a creative program for providing reading materials for parents.7 after carefully considering the needs of high risk infants and their parents, high school students were enlisted to write poems and stories to be formatted as reading materials for use by parents. the collection of over 250 children’s stories with illustrations entitled, “cuddle time tales,” was formatted into a single volume and provided to all parents with an infant in the nicu once they had settled into the environment. parents were at first guided in their reading with some information provided about outcomes of parents reading to infants while in utero and to full term infants. they learned that the rhythmicity of their voice could be soothing to their infant and that they needed to recognize their infant’s behavioral cues before and during the reading so they could adjust the intensity of the interaction based on their infant’s reactions. a parent handout was also created to provide education about the benefits of reading to young infants. although the results of this program are not stated in measurable terms, the authors provided many anecdotal examples of the success of the implementation of the program. lariviere and rennick (2011) examined the effects of parent book reading in the nicu on parent-child interaction and on whether parents were continuing to read to the child post-discharge. in a retrospective control trial; 59 infants who received the reading intervention were compared to 57 infants who were in the nicu just prior to the institution of the reading program in the nicu. at three months post-discharge, both groups of parents received questionnaires in the mail and were interviewed over the phone about their nicu experiences and their activities with their child since being home. groups were compared c u r r e n t d e v e l o p m e n ta l r e s e a r c h jacqueline m. mcgrath, phd, rn, fnap, faan developmental observer • 2013 • 11 on parenting activities and in particular on whether parents were reading to their infants in the home. findings indicated that parents who were reading to their infants were more likely to report that the time spent reading made them feel closer to their infant (69%) and found book reading to be an enjoyable interaction with their infant (86%). in addition, parents from the nicu parent reading group (intervention) were also twice as likely to be reading to their infant at least three times a week after discharge; reinforcing the idea that implementation of parent reading in the nicu would also enhance parent-child interactions after discharge. although there is no long term follow-up within this study to continue to examine effects on cognitive development, the positive effects on the parent-infant interactions seem enough to consider this intervention for further study in the nicu. recommendations for practice neither of the studies provides much information about the environments of the nicus where the studies took place; although it seems safe to say that most of the participants were convalescent infants past the crisis of intensive care. that being said, the sound and activity in the environment cannot be ignored if a reading intervention is to be effective and not increasingly stressful for both the infant and the parent. effective routine implementation of this intervention requires that parents have a good understanding of their infant’s behaviors and can distinguish between infant behaviors that signal disorganization and infant behaviors that represent organization and comfort. parents must be supported in reading the behaviors of their infant before such an intervention can be put in place. in addition, the ability to adjust the environment, such as decreasing noise and activity around the bedside, must also be considered. conclusions finding creative ways to foster the parent-child relationship in the nicu needs further exploration. the numbers of studies in this area are limited. more research is needed to better understand how to best support parents who would like to read to their child in the nicu environment. reading to their child may put parents more at ease and may add to a sense of “normalcy” for families during a time when everything about their relationship with their child can seem abnormal in the environment of the nicu. health professionals need to find creative ways to support the parenting role and this includes incorporating routine parenting activities such as reading to their infant. references 1. goldberg s. attachment in infants at risk: theory, research, practice. infants and young children. 2001; 2: 11-20. 2. bozette m. healthy preterm infant responses to taped maternal voice. journal of perinatal and neonatal nursing. 2008; 22: 307-366. 3. fox m. reading magic: why reading to our children will change their lives forever. orlando fl: harcourt, 13-24. 4. fortman k, et al. books and babies: clinical-based literacy programs. journal of pediatric health care. 2003; 17(6): 295-300. 5. karass j, et al. predictors of shared parent-child reading in infancy. journal of family psychology. 2003; 17: 134-146. 6. als h, et al. early experiences alter brain function and structure. pediatrics. 2004; 113(4): 846-857. 7. jones mw, englestad dm. “womb” literacy: reading to infants in the nicu. neonatal network. 2004; 23(4): 65-69. 8. lariviere j, rennick je. parent picture-book reading to infants in the neonatal intensive care unit as an intervention supporting parent-infant interaction and later book reading. journal of developmental and behavioral pediatrics. 2011; 32(1): 1-7. president: gretchen lawhon, phd, rn, cbc, faan vice president for administration: jim helm, phd vice president for organizational advancement: deborah buehler, phd treasurer: gloria mcanulty, phd secretary: deborah buehler, phd assistant treasurer: sandra kosta, ba assistant secretary: sandra kosta, ba additional directors: jeff alberts, phd heidelise als, phd vicki batkin bjornson (as of may, 2013) mandy daly silke mader jacques sizun, md kathy vandenberg, phd inga warren, dip cot, msc elected officers of the nidcap federation international 2012–2013 12 • 2013 • developmental observer d e v e l o p m e n ta l r e s o u r c e s joke wielenga, rn, phd publications abraham m, moretz j. implementing patientand family-centered care: part i understanding the challenges. pediatric nursing 2012; 38 (1): 44-7. alberts, jr, pickler rl. evolution and development of dual ingestive systems in mammals: notes on a new thesis and its clinical implications. international journal of pediatrics. 2012;2012:730673. doi: 10.1155/2012/730673. epub 2012, september 18. alberts jr, & ronca ae. the experience of being born: a natural context for learning to suckle. international journal of pediatrics. 2012;2012:129328. doi: 10.1155/2012/129328. epub 2012, september 26. als h, duffy fh, mcanulty g, butler sc, lightbody l, kosta s, weisenfeld ni, robertson r, parad rb, ringer sa, blickman jg, zurakowski d, warfield sk. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. journal of perinatology. 2012; 32:797-803. azevedo vm, xavier cc, gontijo f de o. safety of kangaroo mother care in intubated neonates under 1500g. journal of tropical pediatrics. 2012; 58 (1): 38-42. badr, lk. pain interventions in premature infants: what is conclusive evidence and what is not... part 2 of 2. newborn and infant nursing reviews. 2012; 12 (3): 141-53. bailey s. kangaroo mother care. british journal of hospital medicine. 2012; 73 (5): 278-81. björk m, thelin a, peterson i, hammarlund k. a journey filled with emotions-mothers’ experiences of breastfeeding their preterm infant in a swedish neonatal ward. breastfeeding review. 2012; 20 (1): 25-31. black, a. breastfeeding the premature infant and nursing implications. advances in neonatal care. 2012; 12 (1): 10-4. blomqvist yt, rubertsson c, kylberg e, jöreskog k, nyqvist-hedberg k. kangaroo mother care helps fathers of preterm infants gain confidence in the paternal role. journal of advanced nursing. 2012; 68 (9): 1988-96. borghi v, razzoli a. procedural pain in newborns: assessing nurses preparedness in a neonatology unit. italian journal of pediatric nursing science. 2012; 4 (1): 23-9. brummelte s, grunau re, chau v, poskitt kj, brant r, vinall j, gover a, synnes ar, miller sp. procedural pain and brain development in premature newborns. annals of neurology. 2012; 71 (3): 385-96. cignacco el, sellam g, stoffel l, gerull r, nelle m, anand kj, engberg s. oral sucrose and “facilitated tucking” for repeated pain relief in preterms: a randomized controlled trial. pediatrics. 2012; 129 (2): 299-308. chinchilla mk. patient family-centered care: a bedside rn’s perspective. neonatal network. 2012; 31 (5): 341-4. committee on hospital care and institute for patient-and-family centered care. patient-and family-centered care and the pediatrician’s role. pediatrics 2012; 129 (2): 394-404. cong x, cusson rm, hussain n, zhang d, kelly sp.; kangaroo care and behavioral and physiologic pain responses in very-lowbirth-weight twins: a case study. pain management nursing. 2012; 13 (3): 127-38. diesel hj, ercole pm. soothability and growth in preterm infants. journal of holistic nursing. 2012; 30 (1): 38-47. discenza d. helping babies therapeutically post-nicu. neonatal network. 2012; 31 (5): 339-40. keith dr, weaver bs, vogel rl. the effect of music-based listening interventions on the volume, fat content, and caloric content of breast milk-produced by mothers of premature and critically ill infants. advances in neonatal care. 2012; 12 (2): 112-119. franck ls, oulton k, bruce e. parental involvement in neonatal pain management: an empirical and conceptual update. journal of nursing scholarship. 2012; 44 (1): 45-54. funk dl, tilney pvr, mitchell s, walker h. unplanned kangaroo transport of a preterm infant. air medical journal. 2012; 31 (6): 264-6. gilrane-mcgarry u, o’grady t. forgotten grievers: an exploration of the grief experiences of bereaved grandparents. international journal of palliative nursing. 2012; 18 (4): 179-87. goldstein rf. developmental care for premature infants: a state of mind. pediatrics. 2012; 129 (5): e1322-3. hammonds m. linking early healthy attachment with long-term mental health. nursing new zealand. 2012; 18 (2): 12-4. harrison c, mckechnie l. how comfortable is neonatal transport? acta paediatrica. 2012; 101 (2): 143-147. haxton d, doering j, gingras l, kelly l. implementing skin-to-skin contact at birth using the iowa model. nursing for women’s health. 2012; 16 (3): 220-30. hoehn ks. pediatric family presence: not a panacea for all. critical care medicine. 2012; 13 (2): 214-5. jackson y. developmental care matters. neonatal intensive care. 2012; 25 (1): 20-21. jackson y. advancing brain oriented care in the nicu: challenges and opportunities... ©yamile jackson. nurtured by design. 2012. neonatal intensive care. 2012; 25 (5): 47-52. kassab mi, roydhouse jk, fowler c, foureur m. the effectiveness of glucose in reducing needle-related procedural pain in infants. journal of pediatric nursing. 2012; 27 (1):3-17. developmental observer • 2013 • 13 kojima s, stewart ra, demas, ge, alberts jr. maternal skin-to-skin contact modulates oxytocin levels in rat pups during acquisition of filial huddling preference. journal of neuroendocrinology. 2012 24 (5): 831-40. laing s, spence k, mcmahon c, ungerer j, badawi n. challenges in conducting prospective research of developmentally directed care in surgical neonates: a case study. early human development. 2012; 88 (3): 171-8. langer c, broghammer n, poets cf. management of change processes in a neonatal department introduction of development promoting nursing according to nidcap [german]. kinderkrankenschwester. 2012 ;31 (8): 327-329. liaw jj, yang l, wang kw, chen cm, chang yc, yin t. non-nutritive sucking and facilitated tucking relieves preterm infant pain during heel-stick procedures: a prospective, randomised controlled crossover trial. international journal of nursing studies. 2012; 49 (3): 300-9. lee hc, martin-anderson s, dudley ra. clinician perspectives on barriers to and opportunities for skin-to-skin contact for premature infants in neonatal intensive care units. breastfeeding medicine. 2012; 7 (2): 79-84. lubbe w. infant mental health: the role of the neonatal nurse. journal of neonatal nursing. 2012; 18 (4): 140. mcanulty g, duffy fh, kosta s, weisenfeld n, warfield s, butler sc, bernstein jh, zurakowski d, als h. school age effects of the newborn individualized developmental care and assessment program for preterm medically low-risk preterm infants: preliminary findings. journal of clinical neonatology. 2012; 1:184-194. mcanulty g, duffy fh, kosta s, weisenfeld ni, warfield sk, butler sc, alidoost m, bernstein jh, robertson r, zurakowski d, als h. school age effects of the newborn individualized developmental care and assessment program for preterm infants with intrauterine growth restriction: preliminary findings. bmc pediatrics. 2013; 13:25. mcmahon e, wintermark p, lahav a. auditory brain development in premature infants: the importance of early experience. annals of the new york academy of sciences. 2012; 1252: 17-24. moninger j. tender touch. parents. 2012; 87 (2): 42-5. montirosso r, del prete a, bellù r, tronick e, borgatti r. neonatal adequate care for quality of life (neo-acqua) study group. level of nicu quality of developmental care and neurobehavioral performance in very preterm infants. pediatrics. 2012; 129 (5): e1129-37. mörelius e; angelhoff c; eriksson j; olhager e. time of initiation of skin-toskin contact in extremely preterm infants in sweden. acta paediatrica. 2012; 101 (1): 14-8. mörelius e, broström eb, westrup b, sarman i, ortenstrand a. the stockholm neonatal family-centered care study: effects on salivary cortisol in infants and their mothers. early human development. 2012; 88 (7): 575-81. morey ja, gregory k. nurse-led education mitigates maternal stress and enhances knowledge in the nicu. the american journal of maternal child nursing. 2012; 37 (3): 182-91. mosqueda r, castilla y, perapoch j, de la cruz j, lópez-maestro m, pallás c. staff perceptions on newborn individualized developmental care and assessment program (nidcap) during its implementation in two spanish neonatal units. early human development. 2013 jan; 89(1): 27-33. nyqvist-hedberg k, häggkvist ap hansen, mette n, kylberg e, frandsen al, maastrup r, ezeonodo a, hannula l, koskinen k, haiek ln. expansion of the ten steps to successful breastfeeding into neonatal intensive care: expert group recommendations for three guiding principles. journal of human lactation. 2012; 28 (3): 289-96. pallás-alonso cr, losacco v, maraschini a, greisen g, pierrat v, warren i, haumont d, westrup b, smit bj, sizun j, et al., european science foundation network. parental involvement and kangaroo care in european neonatal intensive care units: a policy survey in eight countries. pediatric critical care medicine. 2012; 13 (5): 568-77 pölkki t, korhonen a, laukkala h. expectations associated with the use of music in neonatal intensive care: a survey from the viewpoint of parents. journal for specialists in pediatric nursing 2012; 17 (4): 321-328. rejane strapasson m, da silva costa c. the kangaroo mother method in the care to the low weight newborn infant: integrative literature review. [portuguese] journal of nursing ufpe / revista de enfermagem ufpe. 2012; 6 (10): 2535-2541. rossman cl, ayoola ab. promoting individualized breastfeeding experiences. american journal of maternal and child nursing. 2012; 37 (3): 193-9. simonse e, mulder pg, van beek rh. analgesic effect of breast milk versus sucrose for analgesia during heel lance in late preterm infants. pediatrics. 2012; 129 (4): 657-63. taillens f. parenting and attachment. the baby, the object that disturbs. [french] krankenpflege. soins infirmiers. 2012; 105 (3): 48-50. torowicz d, lisanti aj, rim j-s, medoffcooper b. a developmental care framework for a cardiac intensive care unit: a paradigm shift. advances in neonatal care. 2012; 12 (5s): s28-32. trajkovski s, schmied v, vickers m, jackson d. neonatal nurses’ perspectives of family-centred care: a qualitative study. journal of clinical nursing. 2012; 21(17/18): 2477-2487. white-traut r, wink t, minehart t, holditch-davis d. frequency of premature infant engagement and disengagement behaviors during two maternally admin14 • 2013 • developmental observer istered interventions. newborn and infant nursing reviews. 2012; 12 (3): 124-31. yildiz a, arikan d. the effects of giving pacifiers to premature infants and making them listen to lullabies on their transition period for total oral feeding and sucking success. journal of clinical nursing. 2012; 21 (5/6): 644-56. yoshida k, yamashita h, conroy s, marks m, kumar c. a japanese version of mother-to-infant bonding scale: factor structure, longitudinal changes and links with maternal mood during the early postnatal period in japanese mothers. archives of women’s mental health. 2012; 15 (5): 343-52. conferences the 8th international neonatal nursing conference (coinn 2013) in belfast northern ireland, 5-8 september, 2013. http://coinn2013.com/ websites and downloads http://www.bliss.org.uk/improving-care/ family-centred-care/developmental-care-sig/ nidcap/ http://ebookbrowse.com/2012-01-nidcapgm-pdf-d278373888 http://ebookbrowse.com/nidcap-chu-mplparents-pdf-d96184392 http://ebookbrowse.com/newborn-individualized-developmental-care-assessment program-nidcap-200603-pdf-d2870752 video and movie (fragments) in english how do neonatal therapists help with developmental care in nicu? http://www.youtube.com watch?v=4w zbwx1n13q nidcapnurse http://www.youtube.com/watch?v=9vk x2kuntla ten videos on newborn care best practices from global health media project http://globalhealthmedia.org/ assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. nidcap nursery certification program (nncp) the nidcap nursery certification program (nncp) under the auspices of the nidcap federation international (nfi) recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of the newborn individualized developmental care and assessment program (nidcap) for infants and their families. nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd hedlund, med, nncp director at: nncpdirector@nidcap.org or 785-841-5440. we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to joke wielenga, rn, phd at: developmentalobserver @nidcap.org. developmental observer • 2013 • 15 developmental care has come a long way in the faro neonatal unit. from simple routine measures that adapted the environment, with attempts to reduce noxious sensorial stimuli, to the implementation of individualized developmental care, it has been a five to six year journey. today, with the desire to achieve better medical and nursing care we also incorporate practices that reflect individualized developmental and family centered care in our daily practice and in our organizational polices and recommendations. we began nidcap training in 2009 with a nurse and a pediatrician who reached nidcap reliability in january, 2011. many changes have been accomplished since then; doctors and nurses have worked together to improve neonatal care for the infant and family. the team: after nidcap training, special attention was given to team training. workshops, training and mentoring raised staff awareness of the vulnerability of infants born preterm or ill, and their families. now the doctors and nurses coordinate to improve opportunities for rest and sleep, and for family activities in the unit. in 2011, the nidcap professional nurse introduced a more personal approach to training to give every member of staff the opportunity to learn to observe baby behavior and to implement more individualized nursing care. in 2012, we formed the nidcap coordination group that consisted of the nursery coordinator, nurse manager, nurse supervisor (a link to the hospital administration), nidcap professionals (a pediatrician and a nurse), psychologist, social worker and a parent representative. this was a very important step in the implementation of the nidcap program. this group meets monthly. since its formation, many changes have taken place, including: structural changes that were made to the unit; newly drafted standards and protocols; and practices that were less suitable to the individualized and family centered approach to care were changed. families: many changes have been made to facilitate family involvement in the care of their infant and to support the evolving parent-infant relationship. nursing and physician’s rounds are now made outside the care area. this allows parents to be with their infants without the interruption of clinicians at the bedside. a room for families was built to promote breastfeeding and the developing infant-family relationship; siblings can come to be with their sister or brother anytime. family involvement in the care of their infant has increased. parents are supported to offer skin-to-skin contact with their infant as soon as possible; and breastfeeding or breastmilk feeding is supported by the many breastfeeding consultants and promoters that we have in the unit. meetings are arranged with every family in the first week of the baby’s admission. parents can talk about the baby’s situation with the baby’s nurse and doctor. this also provides an opportunity to improve communication and relationships between staff and parents, and to better integrate parents into the unit’s routines. additionally there is a monthly meeting– momentos de partilha (sharing moments)– where any parent can come and talk about anything they want nidcap as a process of creating and sustaining transformations–an example from the faro neonatal and pediatric intensive care nursery, portugal twins resting comfortably with one another. caregiver support for organizing an infant’s alertness. elsa silva, rn, nidcap professional 16 • 2013 • developmental observer with our psychologist, the nursery coordinator and/or the nursing manager. unit structural changes: we still have an open plan unit but it is now divided into three sections. the intensive care unit has twelve incubators. there are five incubators for intensive care, four incubators for special care and there are three for intermediate level care. in addition there are three designated isolation rooms that are utilized to protect very tiny and ill babies in their first days of life, from fluctuating sound and activity levels. the workstation has been moved from the center of the care area to protect infants and their families from the sounds of staff conversations, telephones and printers. another enormous and positive change! environment changes: the sound levels in the nursery are monitored and as a result the environment is calmer and more quiet. lighting in the nursery consists of natural light at day time, and indirect soft lighting when needed. at night time (at about 9:00 or 10:00 pm) the lights are turned off and individualized lights are used to perform care giving as needed. incubators are covered according to our environmental light protocol (incubators are partially covered up to 34 weeks gestational age. when the infant is able to reach and maintain a quiet alert state, the covers are removed as needed). positioning and comfort devices are used and individualized according to the baby’s clinical, developmental and comfort needs. these changes have been very demanding for all, especially supporting the parents to be with their infant, and with the team. reflection has become common practice in the team–momentos de reflexão (time for reflection, a quarterly staff meeting where a specific agenda is discussed related to nidcap). we congratulate ourselves on having a very united team where doctors and nurses speak the same language and have the same goals of promoting individualized developmental and family friendly care (better than centered care). many other subtle changes have been accomplished. despite all this effort, we know that more can be done to improve and maintain optimal care for infants and their families. for example, family sharing opportunities need improvement; breastfeeding rates could be higher among infants born premature; and parents could be more involved in clinical decision making. the infants’ need for their mother’s voice, body and milk are at the center of our action plans (while still supporting the fathers’ desire to be with their infant during both caregiving and quiet times). it is with joy that we have embraced the nidcap philosophy in our unit and we hope with this we can share that joy, and the sense of doing something for the well being of infants and families in portugal. we have recognized that these babies and their families are at the center of our unit and care, and that everything and everyone matters in the attempt to improve the future for them. i want to share our gratitude to inga warren for her support and friendship during our nidcap journey, and to the faro neonatal intensive care unit staff for their openness, joy and efforts to accomplish our achievements so far. nursery staff supporting a family to be together. neonatal developmental & behavioral care a multidisciplinary approach for newborns in the nicu and beyond new orleans november 6-9, 2013 register online at www.contemporaryforurms.com or by calling 800-377-7707 presented in collaboration with developmental observer • 2013 • 17 as vice president, i have taken the liberty to usurp a few moments of our meeting for a short yet hopefully powerful testament to our founder and president heidelise als. it has been my honor to bear witness to the evolution of an exacting scientific inquiry into the comprehensive approach to care that is developmentally supportive and individualized to the infant’s goals and level of stability that has become nidcap. from the earliest research to a former nurse administrator colleague rita gibes, now grossman, who asked a simple but unforgettable question, “heidi, can’t you teach other people how to do this observation and recommendations?” for thirty years heidi has been our sacajawea in guiding, leading, mentoring and facilitating the transformation of each of us as nidcap professionals. at this time heidi is graciously responding to the wishes of the nfi membership in creating opportunities for new leadership perspectives through a term limit of a maximum of two consecutive years as president. it is imperative that we pause and acknowledge with heartfelt gratitude the thirty years of formal nidcap guidance and education from the 1982 establishment of the first nidcap center; her 23 years leadership for our annual nidcap trainers meetings and now eleven years as founder and president of the nidcap federation international. her unfailing vision, passion and endurance will continue in her ongoing role as a member of our board of directors and chair of the quality assurance committee. on behalf of all of us heidi, please accept this small token of our appreciation. —gretchen lawhon, phd, rn, cbc, faan smaller version of the award made from the design of the nncp nursery certification award. nfi membership meeting september 29, 2012 the 24th annual nidcap trainers meeting hosted by the carolina nidcap training center the graylyn international conference center winston-salem, north carolina usa saturday, october 5—tuesday morning, october 8, 2013 (by invitation only) more information will be available in the summer, 2013. 18 • 2013 • developmental observer v o i c e o f t h e n e w b o r n continued from page 2 n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d continued from page 3 i have progressed in my career from a shy new graduate, into an experienced nurse. it is not only my own nicu experience, but the nicu experiences of all the infants and their families, that have molded the care that i provide as a nicu nurse. i don’t tell my story to all i meet, but to those whom i do tell, i make sure that they understand my story is the exception. many challenges face an infant that enters the world too soon. the journey can be like riding a rollercoaster. one mother of a micro-premie told me that my story gave her hope in her son’s first few critical days of life. several months later, i had the privilege of being the nurse for this family the night of their rooming in. the mother had remembered me and my story, during her infant’s stay in the nicu and she was so excited she could finally take her baby home. in this case, i understood the feelings that my own nurses had felt about my discharge, all those years before. when caring for my patients, sometimes it is the little things that help the family and the infant feel the most comfortable. the linen is clean and smooth. the patient’s arms and legs are tucked in to midline and the infant is securely positioned in his snuggly or z-flow mattress for a good night’s rest. supporting parents as they care for their infant at bedside is so important to the infant as well as the parents. taking a temperature or changing a diaper lets the parents feel like “real parents” in the high technological world of the nicu, often dominated by tubes, lines and drips, that are keeping their tiny infant alive. i try to keep the infant’s stress level in mind by keeping the lights low and silencing alarms as soon as possible. even the slightest movement can cause stress to an infant’s neurophysiological system that is not ready for this high-tech world. as technology has improved, so many changes have occurred in the nicu. we are able to take care of the tiniest and most critical infants. they now have an increased chance at life instead of automatically saying to a parent “i’m sorry, there is nothing that can be done to save your child’s life.” all the tiniest infant needs is just a chance, a chance to fight for a life that began too soon. although i am quiet by nature, i have a strong resolve to give my patients the best care possible. it is personal because i once was in one of those incubators fighting for every breath. i will be forever grateful for those doctors and nurses that never gave up believing in me almost 30 years ago. i love my job and truly look forward to coming to work every day. some nights are extremely difficult, but it is that “chance for life” that i support each infant to strive for, that makes me proud to be here at cook children’s. i often wonder how i was able to leave the nicu with no major problems, after the circumstances of my birth, and the time of the mid 1980s. i feel it is because i was born to be a nicu nurse and share my story, if not in words, then by the care i give to infants and their families. one truly never knows the future of the tiny infants for whom we are caring for, for they may grow up to be someone special. the st. joseph’s training center focuses on several different aspects of the infant’s care. these include: 1) the overall environment. many changes have recently been made to decrease the overall stimulation that the infant is receiving. these include private and semi-private rooms, decreased lighting, decreased noise, primary nursing and fourhanded care giving; 2) family-centered care. we recognize the family as a key element in the infant’s care and provide support and encouragement to allow the families to feel confident in their infant’s care. st. joseph’s has recently embarked on a campaign to increase skin-to-skin care. as seen in various research studies, skin-to-skin has been shown to improve the infant’s overall medical status as well as emotional state and bond with their family; 3) interactions with the infant during care. the nursing staff is educated on a consistent basis regarding the behavioral cues that are expressed by the infant as a way of communicating the infant’s needs for co-regulatory support, or desire to be held within the warm comfort of his mother’s arms while being fed. there are lectures and continuous support to assist the nursing staff to read these signs, as well as proper positioning and handling to provide the infant with support when needed and sensitive reflective caregiving; and 4) collaboration with staff. the staff at st. joseph’s hospital is extremely committed and loyal to the families and the infants. the developmental committee provides support in times of stress for the staff and recognizes the demands of caring for medically fragile infants and their families. st. joseph’s hospital is proud to claim to be the only site for a march of dimes representative in the state of arizona. jill burch, a mother of a premature infant and an employee of march of dimes, provides an amazing resource for our families. due to her own experience, jill presents a support system that is invaluable to many of the families. march of dimes also provides therapeutic activities, such as scrapbooking, educational classes and sibling activities, allowing an outlet for families to talk and support each other. st. joseph’s is committed to growing this program and allowing this continuous support to develop. overall, st. joseph’s hospital and the entire state of arizona has been committed to the nidcap program and developmentally supportive care. with a training center in the state now open, we can only hope that this support strengthens and proves to be a positive outcome for all of the nicu’s throughout the state. we look forward to working closely with the state of arizona, the nfi and nidcap trainers from around the world. developmental observer • 2013 • 19 developmental observer nidcap federation international board of directors and staff 2012–2013 the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president gretchen lawhon, phd, rn, cbc, faan nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@cooperhealth.edu vice president for administration james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org vice president for organizational advancement/ secretary deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu assistant secretary/treasurer sandra kosta, ba national nidcap training center email: sandra.kosta@childrens.harvard.edu jeffrey alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu vicki batkin bjornson marketing consultant marketing/business development email: vickib@netwiz.net mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk silke mader founder, european foundation for the care of newborn infants email: silke.mader@efcni.org jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu inga warren, dip cot, msc nidcap trainer director, uk nidcap training centre at st. mary’s email: inga.warren@imperial.nhs.uk rodd hedlund, med director nidcap nursery certification program nidcap trainer mid-atlantic nidcap center email: nncpdirector@nidcap.org www.nidcap.org national nidcap training center children’s hospital boston and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey, usa director and contact: gretchen lawhon, phd, rn, cbc, faan email: lawhon-gretchen@cooperhealth.edu karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se connecticut children’s nidcap training center connecticut children’s hartford, connecticut, usa co-director: ann milanese, md co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contact: linda lacina, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain, established 2011 hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, med contact: windy crow email: stjosephnidcap@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org/membership.aspx, or email us at nfimembership@nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment 18 • 2022 • developmental observer in july of 2021, the nidcap federation international (nfi) lost a friend, a true champion of our mission, and a generous benefactor, john eugene buehler, jr. through the buehler family foundation, john and his wife deborah, supported the nfi on a very personal level for 20 years. john’s support of his wife’s work with premature infants grew quickly into a profound understanding and true appreciation of the nfi’s importance to the international community of intensive care professionals and the infants and families in their care. giving was an integral part of john’s personality and his life choices, and as the nfi became a part of the fabric of the buehler life, support of its mission became a philanthropic priority for them. john was a pillar of strength behind deborah’s efforts to advance the organization and in particular to design the face of the nfi and advance its reach in the world. john’s generosity touched many aspects of the organization and is most recently and notably apparent in our new website, launched on the 20th anniversary of the nfi’s founding. the new website was achieved with the sole financial support of the buehler family – a gift that lives to further the reach of nidcap and will do so for many years to come. john was a caring, bright presence in the world, a compassionately-minded individual from whom the nfi’s well-being has been nurtured and sustained, and for which the nfi is fortunate and grateful. for john buehler, the nidcap federation international truly was a labor of love. please learn more about his presence in the world through his obituary on the following page. we thank john and deborah, and their children, josh, kate and ian for their generous contributions to the nidcap federation international and we extend our heartfelt condolences to them for their loss. as you read the developmental observer, be reminded of john, who was a contributing force behind the naming of the developmental observer. john’s legacy of support lives on in many ways, and the nfi and its members are forever thankful. gloria mcanulty and sandra kosta john eugene buehler, jr., 1947-2021 doi: 10.14434/do.v15i1.33790 2022 • developmental observer • 19 john eugene buehler, jr., known as gene to his family and college friends, died in marin county, california on july 25, 2021. he was born in syracuse, new york on december 3, 1947, the only child of john eugene buehler, sr. and jane mary agnes roe buehler. he is survived by his beloved wife of 32 years, deborah moir buehler of mill valley, california, his three children joshua d. buehler, kate r. buehler and ian p. buehler, and his parents-in-law joan p. moir and virgil p. moir iii. after graduating from christian brothers academy in syracuse, john attended boston college as a freshman in september 1965 and graduated in june of 1969. soon thereafter, he served in the us navy as an electronics technician, traveling the world and serving valiantly during the vietnam conflict, while earning the national defense service medal, vietnam service medal, and vietnam campaign medal. john returned to boston, his adopted home. he earned his jd at suffolk law school while serving as an editor on the law review. he later did graduate work at the georgetown law center. after a stint serving as a clerk for the rhode island supreme court, he became an associate at bingham, dana & gould llp, working in the investment securities department. he then took a position as associate counsel in the investment law division at the john hancock mutual life insurance company. in 1987, john moved on to become the general counsel and chief business development officer at energy investors fund group in boston, a private equity firm dedicated exclusively to the independent power and electric utility industry (the first of its kind). he became a co-managing partner. john’s vision and leadership spearheaded the remarkable growth of the company, establishing it as a leader in the industry. john always remembered his roots and the core values that his parents and his beloved granny roe instilled in him. john was exceptionally honored by his boston college affiliation and the friendships he made there. he was enormously proud of serving as a two-term member of the boston college board of trustees. his business experience and love of his alma mater made him a valuable and guiding member of the university’s governing body. in addition, he was an extraordinarily generous benefactor to the school he so dearly loved. he and deborah endowed the buehler sesquicentennial assistant professorship for educator scientists at bc’s lynch school of education, supported bc’s veterans memorial in honor of alumni who lost their lives serving in the military during wartime, and funded the john e. buehler, jr. family athletic scholarship fund for starting pitchers on his beloved bc baseball team in honor of his parents. many of his lifelong friends dated back to early days spent living in fenwick hall at bc. if “friendship is like the medicine of life”, the friendships that john had are a testament to that observation. john truly cherished the people in his life. his generous and engaging style of entertaining was legendary. he particularly loved the sea ranch in california where he was always happy hosting gatherings with family and friends alike, making everyone feel welcome. he was a bc football season ticket holder for four decades and he was proud to commandeer a loyal cadre of classmates, family and friends in their devoted attendance at games at alumni stadium and beyond. john’s journey was characterized by professional achievements, lifelong friendships, and most especially, by his love and devotion to his adoring family. he was exceedingly proud of the accomplishments of his wife deborah and his spirited and talented children. john championed each member of his family in every way. he supported deborah’s work with the nidcap federation international, the nonprofit organization for premature and ill newborns and infants and their families in hospitals. john was an enthusiastic supporter of josh’s career as fine dining chef, kate’s passion for early elementary school teaching, and ian’s dedication to bc business schooling and soccer playing. it was typical for john to balance organizing his demanding professional travels around his attendance at school, sports, restaurants, cultural and family events whether they were in california, massachusetts or somewhere in between. no occasion or conversation with john would be complete without his inviting others to share in the love and pride he had for his family. john was effervescent, charismatic, yet humble. he had the unique ability to make everyone in his presence feel happy and welcome. he is greatly missed by everyone who knew and loved him. obituary as published by the boston globe, august 13-15, 2021 2 • 2021 • developmental observer early kangaroo mother care in preterm infants: is it safe? bedetti l1, bertoncelli n2, lugli l2, spaggiari e2, cuomo g2, cosimo ac2, di giuseppe m2, ierardi g2, lelli t2, muzzi v2, paglia m2, pezzuti l2, piccolo a2, sabbioni f2, torcetta f2, torelli p2, lucaccioni l2, ferrari f3, berardi a3 1 phd in clinical and experimental medicine, university of modena and reggio emilia – italy 2 department of mother's and child's health, neonatal intensive care unit, aou modena – italy 3 university of modena and reggio emilia italy aims kangaroo mother care (kmc) was first described in 1978 by dr. edgar rey sanabria as an alternative to the incubator in lowresource countries. over time this practice has been extended to high income countries because it is effective in improving infant growth and neurodevelopment, especially in preterm infants. however, kmc is frequently feared by health care professionals, particularly nurses who are in charge to support infants and parents during the procedure. the aim of this study is to demonstrate the safety of early kmc in preterm infants. methods a prospective observational monocentric study was performed. infants born between june 2018 and june 2020, with gestational age <33 weeks and birth weight <2000 grams were monitored while having kmc during the first three weeks of life. infants with necrotizing enterocolitis, sepsis, congenital malformations, receiving mechanical ventilation or with more than five apneic episodes in the hour prior to kmc were excluded. continuous oxygen saturation (sao2), heart rate (hr) and respiratory rate (rr) as well as body temperature were registered during kmc, and in the hour prior to kmc. the minimum duration of the kmc session was 90 minutes. information regarding post conceptional age, weight, respiratory support, presence of central venous catheter and onset of sepsis within 72 hours after the procedure was collected. two physicians, blinded to patient conditions and period of analysis (before or during kmc) evaluated desaturation episodes (sao2 <85%, >15 seconds), bradycardia (hr <100, >15 seconds), and apnea (pause in breathing > 20 seconds associated with desaturation or/and bradycardia). wilcoxon signed-rank test was used for statistical analysis. the study was approved by the local ethics committee. results we analyzed 83 episodes of kmc for a total of 38 infants. mean gestational age at birth was 29 weeks (range 23-33 weeks). mean post conceptional age, days of life and weight at kmc were 31 weeks (range 25-34 weeks), 10 days (range 1-20 days) and 1131 grams (631-2206) respectively. seventy-seven percent of patients were on respiratory support and 47% of patients had a central venous catheter (umbilical catheter or peripherally inserted central catheter) during kmc. total duration of desaturation, total duration of bradycardia, number of apnea episodes and body temperature were not statistically different during kmc episode and the hour prior to kmc. no adverse events related to catheters were reported. one session was followed by sepsis. conclusion kmc plays a key role in the care of the preterm infants, and deserves to be increasingly offered to infants and to their families. the results of this study should reassure health care professionals, highlighting the safety of the procedure in preterm infants and the possibility to perform kmc in an intensive care setting in the first weeks of life. references: 1. boundy eo, dastjerdi r, spiegelman d, fawzi ww, missmer sa, lieberman e, kajeepeta s, wall s, chan gj. kangaroo mother care and neonatal outcomes: a meta-analysis. pediatrics. 2016 jan;137(1). doi: https://doi.org/10.1542/peds.2015-2238 2. shattnawi kk, al-ali n, alnuaimi k. neonatal nurses' knowledge and beliefs about kangaroo mother care in neonatal intensive care units: a descriptive, cross-sectional study. nursing and health sciences. 2019 sep;21(3):352-358. doi: 10.1111/nhs.12605 3. park hk, choi bs, lee sj, son ia, seol ij, lee hj. practical application of kangaroo mother care in preterm infants: clinical characteristics and safety of kangaroo mother care journal of perinatal medicine. 2014 mar;42(2):239-45. doi: 10.1515/jpm-2013-0066 4. kommers dr, joshi r, van pul c, atallah l, feijs l, oei g, bambang oetomo s, andriessen p. features of heart rate variability capture regulatory changes during kangaroo care in preterm infants. journal of pediatrics. 2017 mar;182:92-98. doi: 10.1016/jjpeds.2016.11.059 5. carbasse a, kracher s, hausser m, langlet c, escande b, donato l, astruc d, kuhn p. safety and effectiveness of skin-to-skin contact in the nicu to support neurodevelopment in vulnerable preterm infants. journal of perinatal and neonatal nursing. 2013 jul-sep;27 (3):255-62. doi: 10.1097/jpn.0b013e31829dc349 a semi-annual publication of the nidcap federation international ©2021. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria lopez maestro, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer doi: 10.14434/do.v14i1.31808 as in all large projects, our nidcap certification started with an impassioned person who was exposed to a new idea, who then shared that idea with someone who cultivated a vision. that vision, having gone through the fires of reformation brought on by changing staff, financial highs and lows, and what we call “life,” persisted due to the desires that were born in our unit about six years ago. herein lies the beginning and middle of our nidcap story, but of course the ending will never be written—it will be lived out daily with our families. as is common with many newborn intensive care units, or so it seems, ours has evolved from meager beginnings. the nicu started in a small basement space housing six incubators and three cribs, a few nurses and one very passionate neonatologist. developmental care was seen by our nurses as primarily a physical therapy initiative back then. by the middle of 1993, we were delighted to have moved upstairs into a single large room with a capacity for 17 beds and two critical bed spaces tucked into its framework. our nurses started to become more aware and intrigued with developmental care interventions through continuing education opportunities, promoted by our physical therapist and an inspiring newly hired nurse who had recently come from a hospital where developmental care was part of the routine patient care. by march of 2005, we had moved into our current unit, complete with 14 private and semi-private rooms and a capacity for 23 patients; its design was based on the 2002 newborn icu design standards from the fifth consensus conference. the nicu is now staffed with 40 nurses and five neonatologists. the planning and development of our new “state of the art” structure was due to the forward thinking of several key directors, staff members and parents who had an innate appreciation for the emerging practice of developmental care for the newborn. our unit’s nursing director, seeing this new unit she had spearheaded, rightfully realized that this specialized environment was just the beginning of a much greater project to bring an educated practice of developmental care to our nicu. what has followed was the further support found 2011 vol. 5 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish.” john quincy adams quotes (6th us president [1825-29], eldest son of john adams, 2nd us president [1767-1848]). continued on page 2 table of contents making progress .................................. 1 brest nicu achieves nfi nidcap nursery certification ................................ 3 transitions within the nfi board ........... 4 nidcap profile .......................................... 6 family voices ............................................. 9 nidcap training centers from around the world .................................................. 12 current developmental research ........ 14 supporting families ................................ 16 making progress over the last 20 years the nicu at elliot hospital, manchester, new hampshire front row left to right: shari deyoung, pt, bs; terri jones, rn; kristy hanson, rn, back row left to right: pamela bedford, rnc, bsn; elaine pino rn, ba; maureen lemay, rn, bsn 2 • 2011 • developmental observer in the actions taken by our developmental care committee in the form of staff education, the integration of a developmental care specialist position and finally, our nidcap certification program which was formulated in conjunction with our developmental care specialist and nicu leadership. the six of us that are working towards our nidcap certification represent the most recent steps towards the goals that were set into action years ago--even before five out of the six of us began working at elliot hospital. how nidcap training began moving to this newly designed unit was truly inspirational. family-centered, developmentally supportive care seemed to flourish overnight, regardless of any human intervention. the nursing director overseeing our beautiful “state of the art” nicu repeatedly encouraged us all to “shoot for the stars!” this was the inspiration needed and the time was right. over the next six month period, the new developmental care specialist constructed a comprehensive nidcap training proposal. she presented it to the nursing director, hospital administrators, the hospital board of directors and the mary & john elliot charitable foundation, a non-profit, charitable organization created to provide financial support to the various needs of the elliot health system. the proposal was accepted and the funds were allocated for the training of six nicu staff. in preparation for the training, master trainer gretchen lawhon, rn, phd was contacted and planning continued with the developmental care specialist and nicu leaders. a large multidisciplinary group including two former nicu parents was formed and was referred to as the nidcap leadership committee. this committee was charged with filling out the nicu site assessment and was later transformed into a powerful steering committee that focused on family centered care and the implementation of the nidcap process. simultaneously, a selection committee was designated to define and carry out the trainee selection process. five nicu nurses and one physical therapist were selected for training which began on january 25, 2010. meet the trainees the nicu’s developmental care specialist, pamela bedford, rnc, bsn provides the leadership for the nidcap trainees while simultaneously going through the training herself. this model of embedded leadership allows for both collaboration and role modeling as the training progresses. pam is dedicated to the challenge of practice and culture change in the nicu and hopes to further this through the implementation of nidcap training. she is proud to say that the entire nicu team recognizes an elevated standard of care as family-centered developmentally supportive care that has become ingrained into their patient care delivery in our nicu. kristy hanson, rn, adn a clinical leader on the night shift, is in an excellent position to spread her nidcap knowledge to our colleagues and her dedication to this training provides an important level of credibility for the staff. kristy has been actively committed to the implementation of the developmental care program since the first developmental care committee formed. she has been instrumental in supporting the program and nidcap training from a management perspective. kristy chose to be nidcap certified to enhance her knowledge and better support the nicu staff with individualized, familycentered, developmental care planning. elaine pino rn, ba brings twelve years of neonatal nursing to the nidcap work and demonstrates an especially strong attitude toward the multidisciplinary approach to care in the unit. she would like to be nidcap certified because she believes that improving her observational skills will allow for a more consistent and sensitive approach to caregiving. elaine also recognizes the need for all newborn caregivers to gain a higher level of understanding for developmentally supportive care. maureen lemay, rn, bsn was a newly graduated nurse when she started working in the nicu eight years ago. she has been an active member of the nicu developmental care committee and is the nicu’s resource nurse for breastfeeding and bottle feeding practices. maureen strives to make a greater impact on care delivery through supporting the sensitive attunement of care providers and parents to the infants’ neurobehavioral organization. she came to nidcap training with the expectation that it would facilitate more family-centered individualized care plans and improve the overall quality of care. shari deyoung, pt, bs has 18 years of newborn experience along with her genuine enthusiasm for the nidcap work. shari’s perspective as a physical therapist trained in the neonatal oral motor assessment scale (nomas®),1 adds to the group’s a semi-annual publication of the nidcap federation international © 2011. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer developmental observer • 2011 • 3 overall level of expertise. she has facilitated a number of developmental care initiatives in the nicu over the years. shari joined nidcap training with the objective of expanding her knowledge base and improving her observational skills in order to enhance developmental care practices and parent education. she anticipates that the process will help to integrate a team approach to infant care. terri jones, rn brings a wealth of experience from a variety of different settings including oakland children’s which was in the forefront of individualized developmentally supportive care since the mid-eighties. terri’s nearly twenty years of neonatal nursing experience makes her an ideal trainee as well as an excellent role model. through nidcap training, terri expects to be able to apply her new skills and knowledge within her own practice; to be an effective resource for all disciplines; and to make improvements to the care practices in the nicu. she feels that nidcap is a perfect fit for her because its concepts are aligned with her professional values and motivation for promoting the family unit. as time has evolved, a larger percentage of our families are staying at the bedside and thus have a direct impact on their baby’s care. it is an evolution that has been born out of a more sincere, honest commitment from our nurses and other care providers to invite them to stay. this progression has been guided by the leadership committee who defined and acknowledged a commitment to include parents in rounds and to hold ourselves responsible for opening up communication between parents and staff. it was nidcap that gave our vision a name and a face for all of our staff. the end result the family has taken a principal role in nurturing and caring for their infant and our unit has changed for the better! our parents have a visible place here on their terms, not just on ours. of course, we now have a new set of challenges but we will continue to shoot for the stars! after 19 months of nidcap training, we are so pleased and excited for the nidcap reliability day scheduled for september 12th of this year! nidcap training update congratulations are offered to each one of these outstanding women of “the elliot six” who have now successfully transformed themselves from nidcap trainees to nidcap professionals as well as to their supportive staff and administration of the elliot hospital newborn intensive care unit. this nicu has been “forever changed” by the growth and development highlighted in the six remarkable advanced practicum experiences of six infants and their families which became a multidisciplinary unit-wide implementation of nidcap. references 1. palmer m. neonatal oral motor assessment scale (nomas®). 1983 the brest nicu team is very happy to have achieved the nfi nidcap nursery certification. the nidcap nursery certification program (nncp) was seen as an institutional quality improvement process and an opportunity to share the philosophy of nidcap in a whole mother and child department (brest university hospital). the process started in early 2010 with the translation of the nncp criterion scales manual1 supported by the brittany regional hospital agency. then four groups of professionals worked hard to perform the self-evaluation suggesting 10 points of improvement. the department board selected five actions in october 2010 for immediate changes. the nncp site review visit took place in december, despite a snowstorm at the paris airport! parents, staff and directors were very excited by these three days of interviews, document analysis and observations. next steps: to pursue the quality improvement process toward a more individualized family-centered approach to care; to present this nncp experience to our national certification visitors from the haute autorité de santé in september 2011; and to share this experience with european nicus. reference: 1. smith k, buehler d, & als h. nidcap nursery certification criterion scales. 2008. boston, mass: nidcap federation international, inc. the brest nicu achieves nfi nidcap nursery certification in 2011 jacques sizun, md the brest nidcap team holding the nncp award. pictured from left to right: sylvie minguy rn, isabelle olivard rn, cathy boucher rn, jacques sizun md, maryvonne quénéa rn, nathalie ratynski md, béatrice kerleroux rn. nidcap nursery certification was celebrated during the first frenchspeaking annual nidcap meeting in brest, may 26-27, 2011. 4 • 2011 • developmental observer karen smith, rnc, med is the clinical developmental specialist and developmental care educator with the newborn intensive care unit and nicu follow up clinic at st. luke’s regional medical center in boise, idaho. she has over twenty-eight years of neonatal nursing experience and has been involved with nidcap since 1989, when she became a nidcap trainee through the university of washington infant transition project. while ms. smith was working on her basic nidcap training, she made a decision and firm commitment to become a nidcap trainer. much to her credit as well as dedication and perseverance, ms. smith realized her goal of becoming a nidcap trainer in record time. in 1995, ms. smith created the st. luke’s nidcap center in boise, idaho. she has been attending our annual nidcap trainers meetings since 1992 and hosted two of them in the breathtaking idaho surroundings of mccall in 1997 and sun valley in 2006. prior to becoming a member of the nfi board of directors, ms. smith was and remains a highly valued and active nfi member who has been the co-chair of the committee on nidcap nursery acknowledgment. as a board member, in 2004 karen agreed to chair that committee and renamed it the nursery recognition committee. re-elected in 2005 and again in 2008, ms. smith continues to provide enormous energy and exemplary leadership in growing the nfi nidcap nursery certification program (nncp). further, ms. smith and her colleagues created an exemplary nfi-certified nidcap nursery in their own hospital. from being the first in the pilot phase for the nncp, karen experienced and continues to help to refine the process for her own and other units. the newborn intensive care unit at st. luke’s medical center is an ideal flagship for the nncp and provides both the nurturing environment for infants, families and staff combined with the most respectful attitude and care that is the nidcap model. ms. smith is a master nidcap trainer and is nearing completion of her apib trainer training. she teaches nidcap on a global basis including units in the united states, norway, italy and taiwan. with great appreciation for her direction, leadership and dedication, we thank ms. smith for her past seven years of amazing productivity as a member of the nfi board of directors. and we are grateful that she has agreed to continue her invaluable contributions with the nfi and the nncp in her role as co-chair of the nncp committee. roger sheldon, md, mph has also completed seven years of service as a member of the nfi board of directors. dr. sheldon was one of the very first neonatologists to participate in nidcap training both from an administrative and individual professional perspective in the early eighties. he provided the medical leadership and support for the first nidcap training center outside of boston with the creation of the sooner nidcap training center at oklahoma children’s hospital in oklahoma in 1986. dr. sheldon and his colleagues in oklahoma hosted two of our annual nidcap trainers meetings, one on monkey island in 1994 and the other in oklahoma city in 2004. both of these meetings provided nidcap professionals with unique midwestern cultural experiences and a special perspective on native americans. dr. sheldon was first elected to the nfi board of directors in 2004 and was re-elected twice in 2005 and 2008. he joined the nursery recognition committee in 2005 and has served on the nncp committee as chair of the application subcommittee, from 2006 to 2008. he has been actively involved as a physician site reviewer, offering his invaluable perspective to the pilot process and now the actual program. in 2005, dr. sheldon joined the newly established nfi membership committee and provides much appreciated contributions to that committee. further, he serves with leadership and diligence on the nominations, appointments and elections committee since 2006 and was the chair of the outreach committee since 2009. recently, dr. sheldon has retired from his long standing position as professor of pediatrics with the university of oklahoma and medical director of the oklahoma infant transition program and sooner nidcap training center and moved to minnesota. although dr. sheldon has completed his tenure on the nfi board, he graciously will continue to be an active nfi member, nncp site reviewer, and has committed to continue the work he began on publishing an evidence review article on nidcap within the context of the american academy of pediatrics. with deep appreciation for their countless and ongoing contributions, we stand to honor karen smith, rnc, med and roger sheldon, md, mph. for their seminal work with the nidcap federation international. transitions within the nfi board of directors gretchen lawhon, rn, phd and deborah buehler, phd following the recent election at the nfi membership meeting in september there has been a change within the nfi board of directors and we would like to express our appreciation to two departing board members of long standing as we welcome two new board members. the nidcap federation international would like to acknowledge the many contributions of two board members, karen m. smith, rnc, med and roger sheldon, md, mph, who have completed their terms. developmental observer • 2011 • 5 dr. alberts is a professor of psychological and brain sciences at indiana university, bloomington. he has devoted much of his career to studying behavioral, sensory, and physiological aspects of development – in fetal, newborn, and infant rodents (i.e. rats and mice). he has received research support and recognition from the national institutes of health (nimh and nichd), the national science foundation, and nasa, including a research scientist development award and a merit award from the nih. while maintaining his lab and teaching, he served for 12 years in administration at indiana university as associate vice president for research. since 2010, dr. alberts has been a nidcap trainee at cincinnati children’s hospital. inga warren, dipcot, msc is the director and lead trainer for the uk’s nidcap centre, based at st. mary’s hospital, linked to imperial college and a network of neonatal units in northwest london. as an occupational therapist, she has worked in neonatal care since 1990 with children and families from a wide variety of healthcare settings, ms. warren’s main area of interest currently is education and finding innovative and effective ways to make the nidcap philosophy and principles more widely known and understood and the training more accessible. in recent years, her work has taken her to fourteen countries, and she is interested in how nidcap can be adapted to meet the different challenges that each country, and indeed each unit, faces and how to set them on the path to nidcap. the nfi board of directors would like to welcome our two newly elected members, jeffrey alberts, phd and inga warren, dip cot, msc. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. nidcap nursery certification program (nncp) the nidcap nursery certification program (nncp) under the auspices of the nidcap federation international (nfi) recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of the newborn individualized developmental care and assessment program (nidcap) for infants and their families. nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact the nncp director at: nncpdirector@nidcap.org or 785-841-5440. 6 • 2011 • developmental observer a remembrance the nfi and the nidcap world suffered an enormous loss on june 27 when martha kendall holmes died unexpectedly at her home in oklahoma city of an apparent heart attack. the sooner training center and the neonatal section at the university of oklahoma as well as colleagues from other parts of her life mourned her passing at a memorial service held on july 12. i shared some of my thoughts, but i also learned about my friend and colleague of 31 years. we heard about her dedica tion to the nicu infants and their families, about her musical talents, her devotion to social work, and her many service contributions to causes like the coalition to abolish the death penalty, zonta international (a global organization working to advance the status of women worldwide through service and advocacy), and the democratic party. and we heard about her beloved dogs. martha was born in western oklahoma where, her childhood friends recalled, she distinguished herself as a good friend and excellent musician even in grade school—every performance of soloist or choir in sayre, oklahoma in the late ‘50’s seemed to be accompanied by martha kendall. these talents earned her a place in the piano program at the ou music school starting in 1959. one of her soloists from that time sang at the memorial service and remembered her friend and accompanist as a standout musician and loyal friend. how many people do you know who can play any song in any key—just by hearing the melody? and she could dress it up with rhythms, arpeggios and glissandos you wouldn’t believe. martha had a musician’s heart and soul. my most moving musical memory of martha came when she improvised accompaniment for another close friend, an operatic and professional soprano, to sing and play “sweet little jesus boy” off the cuff at a christmas gathering in my home. i still tear up remembering the soft and sweet music they made. however, she also had a heart and soul for the children and the disadvantaged. she earned her masters’ in social work from ou and began working in child welfare for the state department of institutions, social and rehabilitative services (now called the department of human services). she moved to the children’s hospital as the only social worker in our 35-bed nicu. it was there i met her in 1979 and quickly came to respect the huge difference she could make in the experience (and martha hayden kendall holmes, bfa, msw was born august 5, 1945 in sayre, oklahoma, to marie hayden and james melton kendall. she grew up in sayre and graduated from sayre high school in 1963. martha received a bachelor of music, 1970, university of oklahoma and a master’s degree in social work, 1976, university of oklahoma (ou). during the 1970s, martha was one of the original people to organize the oklahoma city parents assistance center. she was a clinical assistant professor of pediatrics at the university of oklahoma health sciences center. in 2009 martha, and her life companion tedd fulp, were presented with the phil wahl abolitionists of the year award, from the oklahoma commission to abolish the death penalty. martha was preceded in death by her parents, marie and james; her sister, norma jane; and her husband, fred. she is survived by her life-partner, tedd fulp; her niece, marquita lopez, and her husband, tony; several cousins; numerous long-term friends; and her beloved and faithful dogs, buddy and gypsy. martha was blessed with the ability to develop and maintain friendships and was known as an advocate for children and families who went the extra mile to achieve positive results. she will be dearly missed by those who knew and loved her (excerpted from “the oklahoman” july 10, 2011). the reflections of martha below celebrate her life, work and the dynamic and innovative person that she was. for those of you who had the opportunity to know martha, she was a rare gift indeed…“what a gift! what a life! what a gal!” (from the oklahoma commission to abolish the death penalty, in memory & gratitude for martha kendall holmes, june 27, 2011). martha hayden kendal holmes, bfa, msw august 5, 1945 – june 27, 2011 n i d c a p p r o f i l e , i n m e m o r i a m developmental observer • 2011 • 7 the lives) of the nicu parents, and thus their babies. when a grant became available to start the oklahoma infant transition program (oitp), martha was the obvious choice to lead this team of social workers and family advocates in enhancing our services to families. it was in this post in the early 80’s that martha noted, and quickly understood the importance of wheelock college’s project welcome and the nidcap revolution underway at boston children’s. she visited both and came home with the idea for extending nidcap to oklahoma. i was uncertain about this, but she convinced me (i can be slow sometimes) that it was the right way to build families and better babies, and that we should look into it. therefore, she convinced heidi als, phd and gretchen lawhon, rn, phd to visit oklahoma city and show us how it was done. heidi recalls being impressed that we had numerous doctors in the audience right from the start—martha made that happen. we also learned that it could take longer than one visit to establish a training center, but martha would not be deterred, and we were able to start the first nidcap training center outside boston. she took the training center into her oitp program and secured state and federal funding, selling it as an expanded transition service for building families and improving outcomes. it continues there, more than 20 years later. looking back, i am amazed at the prescience and perception that allowed her to see this opportunity and bring it to pass. she truly understood the implications of nidcap and developmental care before anyone else outside boston. what a change she made in our care of babies and families! martha was also central in the founding of the national association of perinatal social workers, and very active in the national association of social workers, which honored her as national social worker of the year in 1999. our trip to washington for the presentation was a wonderful experience; the award was well-deserved. martha also served the nasw again as executive director of the oklahoma chapter during the last few years of her working career. martha didn’t have an easy life—an unassuming small town start, the loss of her husband of two years in an auto accident, a long and hard career in high-pressure environments—but you never heard her complain or bemoan her lot. she prevailed and made enormous contributions to the wellbeing of our patients and families in oklahoma, and by extension all over the nation. the babies and families don’t know it yet, but they too will miss martha holmes, almost as much as i do. roger sheldon, md, mph emeritus professor of pediatrics (neonatology) university of oklahoma “a mover and a shaker” martha was a mover and a shaker, although my memories of her were of her sitting at a desk in the oklahoma infant transition program calmly directing the activities and being there for anyone who needed someone to listen and to care. martha was also formidable. when she was not happy with a decision or an activity, she would say “well, we’ll just see about that.” the next thing i knew, the issue had been addressed and the people involved were pleased with the outcome. when she wanted something done, it was always “well, that just needs to happen and we will make it happen.” and it did. my first encounter with martha was when i moved from new mexico, a newly trained and reliable apib administrator, to oklahoma. i received a call from a friendly sounding woman who said “you need to come and work with us.” no, “hello, welcome to oklahoma!” no, “what education and experience do you have?” no, “would you like to work with us?” it was another example of “whatever martha wants, martha gets.” her positive attitude and “can do” approach is why she was such a wonder back then and what her legacy represents. martha loved classical piano music, but she really loved her dogs. she enjoyed knowing that her oldest dog was named “duffy,” a familiar name in the nidcap world. martha adopted and had three feisty dogs at a time. she proudly displayed their portraits on her desk. she also loved going to the most recent movie releases. she spent much of thanksgiving and christmas day in the theater and entertained us with her evaluations of the screen play and the acting, not to mention the music score. martha’s spirit lives on in the people who learned that her enthusiasm, perseverance and being certain with what you believe in are keys to moving our work forward. i will miss her grace, her poise and her always open ear both to the music of the piano and the tempo of the people she worked with. joy v. browne, phd, pcns-bc, imh (iv) mentor professor, departments of pediatrics and psychiatry, uc som director, center for family and infant interaction “a broad thinker and innovative visionary” martha passed away unexpectedly on june 27, 2011. she and i had a telephone call scheduled upon my return from international nidcap training travel that took me to shanghai, china. needless to say, roger sheldon’s email informing us that martha had passed away came as a great shock. i heard of martha first in 1982; gretchen lawhon rn, phd with whom i worked at the brigham and women’s hospital (bwh) at the time in developing a teaching and training framework for our nidcap research, told me that a social worker from oklahoma had come to visit her and alexandra melzar, our first in-house “nidcap trainer.” martha had heard that the bwh nicu does things differently from other nicus and she had decided to come and see for herself. as she told me later, “the nicu was dark and quiet and the nurses were very quiet, there were parents everywhere, the incubators had covers draped over them; babies on warming tables slept under sun umbrellas or behind blankets hung tent-like from the radiant warmers above them shielding them, from their surroundings. she saw a mother breast feeding her baby sitting in a padded chair next to the baby’s incubator.” she was determined to make this happen also in oklahoma at the university hospital’s nicu. 8 • 2011 • developmental observer she convinced roger sheldon, md the medical director of their nicu, to invite gretchen and me to come to oklahoma city and teach the neonatologist and nurses about this work and how to see and read the baby. this is how nidcap training at other sites began. i am convinced that gretchen and i learned more during our visits to oklahoma than “our students” would have imagined. eager students go a long way to create passable teachers. the motivation and determination of the group and the insight and leadership that martha and roger brought to the process was assuring and validating. the “oklahoma group” did their assigned homework and they wanted us to come back! soon they decided that they wanted to establish a training center of their own so that they could train more of their staff and those at neighboring nicus and in the state. the rest is nidcap history. and thus nidcap trainer training and center development was born. martha was invested in improving the state’s infant health and development situation and support parents of high risk infants from the very beginning. under her leadership the oklahoma infant transition program, funded by the state of oklahoma, worked with families in the nicu and upon discharge into the community. nidcap would fill in the piece from nicu admission forward. martha was a broad thinker and innovative visionary and determined to improve the lives of all infants and families and most of all of those who were in greatest need of support. she was an avant garde social revolutionary, and was so in one of the most conservative states in the us. and martha was the only social worker the formal nidcap family has ever had as member or as center director, which in itself speaks for her uniqueness. martha and i became good friends. i learned about her earlier life before social work, her training as classical concert pianist, her love for music, all music and particularly classical music, chopin, mozart and many others. there was always a record, or later a cd, playing at her home. and she introduced me also to the music of country singer reba mcentire (whom everyone knew it seemed except i); she taught me about american indian culture, red earth, and the trail of tears (she sent me a book to read to inform myself ) and she took me to the american indian museum to enrich my understanding. martha shared with me the tragic story of her very brief and cruelly curtailed marriage, when her new groom was killed on the spot in a terrible car accident on his way to meet her at a restaurant where she waited for him for a meal together as newlyweds. i learned that martha not only cared for babies, their families, other professionals and for people in general, but she also cared for dogs. and she always had at least one or two dogs, they always had tragic pasts and/or were otherwise “in-need-of being-cared-for.” one little very sweet dog i met had been so abused that she had become blind. martha gave her a loving home; one was named duffy (my husband’s last name) whom she had adopted when the family who owned him no longer was in a position to care for him. martha promptly sent me a photo of her own duffy and a children’s book, “duffy on the farm,”1 explaining that she hoped that frank would understand the choice of name. we still have the book and frank and the children loved it. martha was a pioneering multi-culturist; many of you will remember fondly the nidcap trainers meeting exercise bafa’ bafa’ that martha led in order to help us all become culturally more sensitive. we learned a great deal about ourselves and one another, regardless of which population group we belonged to and what ‘language’ (words were not allowed for communication among these preverbal groups, only gestures, as two very different population groups encountered one another and were confronted with sharing sparse resources). no doubt there are some priceless photos in the nidcap archives of the nidcap group’s bafa’ bafa’ experience. martha and tedd fulp, her life’s partner of many years, were very gracious hosts at home and wherever we met. she was always stylish, a smartly dressed professional, no matter what the oklahoma heat at the time; she wore heels always, and never had a hair out of place. she made me often feel like sprucing up my appearance a bit. martha was a most generous person, always fully present for her company, and she always took action to help others in a thousand small ways and in very big ways. she helped a young pregnant oklahoma woman who attempted to take her life by shooting herself just outside of a mall, and ended up in the icu with brain damage. martha found her and her husband the multidisciplinary services required to heal, recover and carry the baby to term, a big nearly 10 pound baby boy, and an ultimately thriving young family after such a terrific multifaceted life’s interlude. the experience led martha to work on pre-partum depression, a very new topic at the time. martha “gave her all” for days and weeks on end in the wake of the cruel oklahoma bombing; she served in the er and she counseled and supported numerous families and children. she supported the memorial museum and planted a seedling in her garden of the one surviving tree at the bombsite. she took me there and shared again the perspective of caring and deep responsibility for one another and she led a big effort to abolish the death penalty in oklahoma, even for timothy mcveigh, the oklahoma bomber, in her mind foremost a person and in need of redemption and rehabilitation. i admired martha, her principles and steadfast convictions, her ethics and integrity. i miss martha. her memory will carry and guide us who knew her, for many years to come. she has made the world a better place for all of us by who she was and what she stood for. in sadness, and grateful to have known martha for many years. heidelise als, phd associate professor of psychology in the department of psychiatry, harvard medical school director, neurobehavioral infant and child studies, children’s hospital boston reference 1. marilyn elson. duffy on the farm. illustrated by lisa mccue. 1984. golden, western publishing co. new york and racine, wisconsin. developmental observer • 2011 • 9 shirly benor fa m i ly v o i c e s our journey to breastfeeding nitzan paster benor was born at the nicu at meir medical center, kfar saba, israel on february 22, 2011. at the time of her birth, she was 25 weeks gestational age and weighed 700 grams. pictured are nitzan and her mother shirly. my name is shirly. i gave birth to my daughter nitzan in the 25th week of pregnancy because of severe hypertension (pre-eclampsia). as a mother of my older child, gefen, now two years old, it was clear to me that i’d like to breastfeed nitzan and enjoy the great connection it creates between us, as well as the nutritional and immunological advantages. when i first came to the nicu, the doctor explained to me that human milk was proven to minimize inflammation of the bowel wall (necrotizing enterocolitis; nec) and also has a positive impact on infant outcome. during the first few days the nurses gently supported me to start pumping breastmilk so my body would start the production of milk. but then, i discovered it is not an easy mission. it turned out that a lot of mothers of very young premature babies (24-27 weeks after conception) experience difficulty after a few weeks of pumping, as it is very demanding, both physically and mentally. i was very motivated to make this work. nitzan is now three months old, in her 39th week, and has started to drink from bottles and breastfeed, some weeks ago. throughout this period, my own milk nurtured her, and this was a great thing for me. as i succeeded in this mission (for now…), i’d like to share some tips and ideas which might help other mothers in their journey: • stay motivated: i kept thinking that this is the best thing i can do for nitzan. for me, it is part of giving life to her. the pumping task became part of my routine and i kept regular pumping times. my previous breastfeeding experiences helped me get through some difficult times. • enjoy skin-to-skin holding: i tried to provide nitzan with skin-to-skin holding two times a day. i placed a comfortable arm-chair next to her incubator, so that nitzan and i would enjoy it as much as we could. i feel skin-to-skin holding served an important role in creating a close connection between me and nitzan. it also had a great impact on my breastmilk production. in my first pumping, after starting skin-to-skin holding, i doubled the amount of milk produced! • pump from both breasts at the same time: this saved me a lot of time and increased my milk production rate. • solicit support and motivation from your partner: i recommend that other mothers support their partners to be part of the mission; support them to be aware and involved in the process and challenges. • solicit support from the nursery staff: information, facilities (pumping room, deep freeze, etc.) and emotional support helped me along the way. • review “case studies”: i had several talks with other mothers of older children, in order to better understand the reasons for breastfeeding success and, at times, its challenges. • keep a written record: i kept a record of my pumping amounts so i could control the total amount of milk production and have a baseline per pumping to compare it to. • take care of yourself: drink a lot of water, eat balanced nutritional meals, and get a good night’s sleep (although this is not easy…). nitzan and i are still learning, and have a way to go with breastfeeding. i am encouraged by what we have done so far, and hope we can make it eventually to complete breastfeeding. developmental care in the moment being together with nurturance and nutrition photograph by elsa silva 10 • 2011 • developmental observer fa m i ly v o i c e s sarah cluff “in april of 2011, i was sitting in a newborn intensive care unit (nicu) watching my nearly adult child, jenna, hold her little brother, only three days old. in a flash of nostalgia, i found myself completely overcome with emotion.” our journey into the world of the nicu began 18 years ago as we welcomed our first child into our family. from that eventful day in february of 1993 until present, we have been a part of ten different nicu facilities, welcoming into our family seven daughters and one delightful little boy. jenna was born on february 8, 1993 at 28 weeks, after weeks of unexplained preterm labor. she weighed three pounds, five ounces, and to me, she was the most beautiful sight i had ever the privilege to gaze upon. my first glimpse was fleeting as half a dozen medical personnel rushed her past me into the adjoining room, promptly hooking her up to hundreds of pounds of machinery. it took me nearly an hour to gather the courage to disregard the nursing staff that had been trying to prevent me from entering the nicu, afraid, i suppose, that i would not be able to mentally handle the sight that i was about to walk in upon. there she was, our tiny miracle, hardly visible for all the equipment needed to keep her alive. we stood in the corner of the nicu for close to 20 minutes before anyone noticed “baby cluff ’s parents” had entered. i stood there, feeling the unbearable ache and longing to reach out and comfort this beautiful little creature that had been wrenched away from me far too soon. i was scared and emotional, and i felt lonely and alone in such a sterile, medical environment. i was surprised at how seldom i would see other parents at their baby’s bedside, but as the days passed i began to understand why. i was made to feel superfluous and uninvited. i consistently felt like an obstacle in the way of the nurses. often i would be told that there was nothing i could do for my baby and i should get some rest. well-meaning people would even suggest that i “take advantage” of the situation and go back to work while i had the best babysitters in the world caring for my infant. it seemed that at every moment, there were “professionals” trying to convince me that i was not needed yet, and should return in a few weeks when i was. decisions were routinely made without regard to my opinion, or even the slightest explanation about why different procedures were being carried out. asking questions would inevitably bring about patronizing answers, hastily and loftily given. the more unwelcome i began to feel, the more determined i was to spend every possible moment at our daughter’s bedside, commonly staying 16 to 18 hours a day. two days into our journey, one nurse finally asked me what we had decided to name our daughter. at that moment, i was consumed with intense incredulity. how could anyone look upon these beautiful miracles and not think of them as babies with names and families? it was a harsh concept to grasp that, to the majority of the nicu staff, our jenna would be only “baby cluff girl,” just one of the nondescript infants passing through the nursery. by the end of the third day, i had been allowed to hold my daughter only one time, for a total of 15 minutes; her daddy, james, had not yet enjoyed this privilege at all. needing to feel actively engaged, i would place my hand in the hole on the side of the incubator as often as possible, and without fail, be reprimanded by a nurse for doing so. every moment that followed for the next five weeks was a journey of indescribable pain, joy, love, heartache, frustration, and ultimately, confidence. confidence because of one extraordinary nurse who gave us the priceless gift of education. she took us on a journey from young newlyweds to parents. on the fourth day of jenna’s nicu stay, we met gretchen lawhon, a nurse working on her research to earn her phd. gretchen quietly watched us for a few minutes as we began our daily routine of scrubbing, gowning, and sitting beside our daughter. i will never forget the first thing gretchen ever said to us. she said, “jenna is beautiful. will you tell me about your daughter?” that was the first moment i felt like a mother. gretchen had not only spoken of our daughter by name, but had actually asked me about her! over the ensuing weeks, gretchen taught us how to understand our baby, how to read the subtle signs that jenna was giving us so we could better communicate with her and meet her needs. we were encouraged to watch our baby, not the monitors. we began to be more assertive with the hospital staff, persistent about receiving explanations and indepth answers to all our many questions. we began to have the confidence to demand that we be included in the primary care of our daughter. gretchen taught us how to properly care for our new little daughter, and this support has continued to bless our lives with every addition to our family. developmental observer • 2011 • 11 our third baby daughter abigail, born at 35 weeks was a very healthy seven pounds, three ounces but presented us with an entirely different set of circumstances. for reasons unknown, she was crashing fast. again we were shuttled up to the major hospital over two hours away where her needs could be cared for. in the 18 months since we had seen it, the unit had been completely overhauled and remodeled. it was an entirely different nicu from the one we previously endured. upon arrival, we were met by a team of care providers whose specific intent was to educate us about the nicu. we were offered an empty patient room just down the hall and told it would be at our disposal as long as the hospital didn’t need the bed for a patient. arrangements were again made to care for our daughters at home, and again, the familiar routine of caring for an infant with special needs began. at such a healthy size and relative healthy gestation, the cause of the crisis was not premature lungs, or inability to maintain body heat. there was no concern for typical preterm presentation of apnea or bradycardia. we faced a reality that no specialist or professional of any kind was able to discover the cause of her rapid decline. she suffered a cardio respiratory arrest and was intubated. as the hours passed, seizures became commonplace and each would leave physical indents in her muscles with the slightest touch. she had no reflexes and the results of an eeg showed no activity. we were invited into a quiet room where we were confronted with the cold sober faces of half a dozen medical professionals prepared to methodically explain that our daughter was going to die. this snapshot is seared forever into memory, never to fade. the excruciating decision was made that life support would need to be terminated. we left that room dazed and in shock, but not numb. anything but numb. ironically, it was at this moment i absorbed some of the many changes that had occurred in the nicu. several parents were sitting bedside to their tiny infants. one mother was looking at a chart, another talking to a doctor. there were three fathers in the room that day, two of them seemingly there to give the mothers a much needed moment to rest, shower or eat. in every direction, people were holding, cuddling, feeding, or otherwise attending to miraculous life in the form of miracle babies. one family was completing the necessary tests and paperwork to discharge their son. the boy’s mother briefly looked in my eyes before turning away, unable to face the pain emanating from my very soul. i found myself hungry to sit by my daughter’s bedside, eager to again be the obstruction in the nicu interfering with conventional routine. did i really, just hours ago, anticipate with horror the weeks i might have spent here? we insisted on an exception to the “no children allowed” so we could bring jenna and mckinlei to the bedside of their sister the next morning and for one brief moment, allow our family to be together and whole. that night, amidst bouts of tears and unsuccessful attempts at sleep, we received a phone call that would change the path we were about to walk. it was about 2:30 in the morning and on the other end of the phone was an unfamiliar voice. my first excruciating thought was that it was too late, that our daughter had already passed away. unexpectedly, i was greeted by the wonderful british accent belonging to a doctor by the name of niel r. buist announcing the possibility that the source of abby’s overwhelming sepsis may have been discovered and was possibly treatable. he asked our permission to begin treatment. we were told that there was great probability that abby’s brain was merely paralyzed due to a toxic amount of ammonia in her blood. we rushed to the hospital with our children where we were educated about the extremely rare diagnostic possibility of than transient hyperammonemia of the newborn. we were informed that the ammonia level in our seven pound daughter’s body was well over 1000. we learned that when an adult has a level of around 60, coma is likely. dr. buist theorized that if we could wash the blood of ammonia through dialysis, perhaps her brain would be able to wake up. this course of treatment was started immediately. this phenomenal man, instructed the nurses to allow our children to see their baby sister and make arrangements for us to have a room at the nearby ronald mcdonald house. for the next 16 days, i rarely left abby’s bedside. never once did someone reprimand me for touching her too much. i was encouraged to ask questions and told that if there was anything i did not understand they would answer, find the answer or arrange to have the doctor come and answer any question i had. we were even encouraged to be available when the doctors met each morning to discuss care and treatment during “rounds”. never once was i made to feel like an obstruction, but rather, a vital member of the team whose entire purpose was to heal a devastating illness and allow our daughter to come home. i was never denied audience with dr. buist and had the opportunity to discuss with him the different nicu experiences the cluff family continued on page 18 from left, jenna cluff two years old, abigail cluff at 12 days old…seven days before hospital discharge, and mckinlei cluff at 18 months. 12 • 2011 • developmental observer dorothy vittner, rn, msn n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d connecticut children’s is an academic medical center with a broad spectrum of over 150 sub-specialty services dedicated to the care of children and their families, located in the heart of the city of hartford, connecticut. connecticut children’s is a young organization established in 1996 as a collaborative effort between newington children’s hospital, hartford hospital and the university of connecticut health center. although it is a relatively small hospital with 147 beds; the intensive care nursery is a tertiary referral center for over nineteen hospitals throughout the state and provides complex medical and surgical services to critically ill and premature infants. the nidcap training center at connecticut children’s first opened at the university of connecticut health center in 2002 through a collaborative multidisciplinary effort between rehabilitative services, medical and nursing support and facilitated via the leadership of cathy daguio, otr/l, mph, med†, marilyn sanders, md and dorothy vittner, rn, msn. the training center transitioned to connecticut children’s in 2007. the nidcap program was integrated into the neonatology program which was designated as the hospital’s inaugural premier program in the fall of 2008. the intensive care nursery embarked on a systems change initiative to support individualized developmentally supportive care practices within the nursery and began formal developmental training in september 2009. the connecticut children’s nidcap training center provides educational opportunities on a variety of topics for professional staff within the hospital as well as the larger community. it is home to the university of connecticut’s department of pediatrics and division of pediatric surgery pursuing innovative clinical research and providing pediatric training to over 500 physicians and allied health professionals annually. connecticut children’s partners with many colleges and universities to train health professionals from a variety of disciplines including: nursing; mid-level practitioners; respiratory therapy; occupational and physical; speech therapy; audiology; clinical nutrition; pharmacy; child life; social work; and radiology to learn about pediatrics. nidcap concepts have been integrated into mentoring and shadowing experiences within the nursery and are provided to foster a comprehensive understanding of infant development as well as support professional learning and growth. the developmental team is used as a resource to share their unique knowledge with professionals who seek to better understand infant behavior and development. the connecticut children’s nidcap training center has focused on four key elements of individualized developmentally supportive care: interactions with infants as care is provided; family-centered care principles; the sensory environment including the physical as well as the emotional atmosphere; and mutually supportive relationships among the care team. the intensive care nursery has strengthened and expanded developmental services to create a cohesive multidisciplinary developmental team from physical therapy, occupational therapy and nursing. this team has redefined service criteria, assessment strategies, documentation and integration into the health team incorporating therapeutic principles within the nidcap framework. historically a nurse developmentalist provided assessments and input to the health team which utilized therapeutic consultations for specific complex medical diagnosis. the rehabilitation department has embraced nidcap principles and has encouraged their staff to participate in multiple educational opportunities. resources from speech therapy and craniofacial services are also utilized as needed to support the infant’s developmental needs. the developmental team continues to create strong foundations for infant interactions and experiences collaborating with the health care team. the nursery leadership at connecticut children’s takes pride in supporting an environment of innovation, creating a culture of continued growth and learning, exploring new ideas and creating dynamic teams embedded in strong family centered care principles partnering with families. the intensive care nursery uses a collaborative approach with resources from families, nutrition, social work, lactation consultants, developmental specialist, connecticut children’s nidcap training center seated: tracy brundage, mot, otr/l, marla booker, rn, bsn, standing caryn bradley, pt mmsc, dorothy vittner, rn, msn, marilyn sanders, md, ann milanese, md developmental observer • 2011 • 13 nursing, case managers, advanced practice and medicine to create individualized plans of care to support each infant in the nursery. in addition to medical rounds the multidisciplinary care team meets on a regular basis with families to define and update the infant’s plan of care. a nursing discharge coordinator facilitates transitional plans of care with each family having input from each discipline as the infant is discharged from the nursery to ease the transition for the infant and family. connecticut children’s nursery is nationally recognized as a center for excellence for low infection rates, high ratings in family and patient satisfaction and has been a pioneer in supporting a mother’s desire to breastfeed their premature and/or critically ill infant. three board certified lactation consultants and 23 certified lactation counselors from various disciplines within the hospital provide extensive lactation services with a multitude of clinical lactation services to support the use of breast milk in the intensive care nursery and hospital setting. the lactation consultants provide support to lactating mothers throughout the hospital including the emergency department and feeding team clinics with one on one consultation services and integration into the health care team. all families who receive inpatient or outpatient lactation services receive follow up phone calls for at least four weeks after discharge. the intensive care nursery has established human donor milk as the standard of care for all very low birth weight infants if their mother is not able to provide milk of her own. a variety of annual educational opportunities are provided to all hospital staff to enhance their knowledge and competence to support breast milk fed infants. the staff is also encouraged and supported to provide breast milk to their own children with free in-home lactation services, comfortable private rooms to express their milk while they are at work and reduced fees to rent electric breast pumps. the hospital is committed to partnering with families to provide exceptional care to children and has collaborated with the institute of family-centered care to strengthen familycentered care practices throughout the hospital. many familycentered care strategies have been implemented with changes in the physical environment, training to hospital staff, and the creation of a resource library for families. the family resource library is available 24 hours a day. it is located in a private room with comfortable overstuffed leather sofa and chairs, a separate desk area with a computer which has internet services, a large bookshelf lined with books, videos and cds as well as a television are available for families to use in this room. a nursery education committee maintains the library and assures the resources provided are current and comprehensive. a few years back, a hospital-wide family advisory board was created with a nursery based family advisory board following to provide input into the nursery’s many aspects of decision making. families are integrated into daily medical rounds which increases partnerships and communication regarding individualized plans of care. privacy is sustained by speaking with soft voices during rounds at each bedside. occasionally, rounds or a formal interdisciplinary discussion of the infant’s plan of care will take place in a separate private room close to the nursery if the conversation is anticipated to be difficult or disruptive to the nursery. when this happens the care team often will consult with the family on their preference for where they would like to have the conversation. the family is encouraged to participate and bring forth their priorities during rounds. although the nursery staff was initially apprehensive and concerned with privacy and impacts on sounds levels in the nursery, the transition to include all families was eased as the physician group and nursery leadership modeled successful implementation. connecticut children’s is a growing dynamic organization committed to improving the lives of children and their families. from the editors we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@ nidcap.org. developmentally yours, rodd hedlund, med senior editor deborah buehler, phd associate editor sandra kosta, ba associate editor gretchen lawhon, rn, phd associate editor 14 • 2011 • developmental observer an international scientific symposium on very early interventions for infants born too early stockholm, sweden, 2010 in november, 2010 the karolinska institute, stockholm, sweden hosted a second international scientific meeting on “ultra early intervention,” allowing the danderyd, sweden site to proudly share their transformation to a couplet care unit. hugo lagercrantz, md, phd opened the day with a discussion of fetal and preterm consciousness,1 citing recent work on resting state networks (rsn) and cortical responses to pain as examples of a growing body of neuro-evidence for preterm consciousness. it appears that the perspectives of neuroscientists and behavioral observers are converging, adding weight to the six presentations that followed, each of which included behavioral observation as part of family centered care. zack boukydis, phd, university of turku, finland described a project that trains nicu staff to join parents in observing and interpreting the meaning of infant behavior, which he hypothesizes leads to improved care for the infant. training begins with a week of lectures and demonstrations, followed by a month of paired practice with a mentor and supervision groups. observations are made utilizing the nicu network neurobehavioral scale.2,3,4 at the time of this presentation, 50% of the staff on the nicu had been trained and it was anticipated that mentors would lead the rest of the staff through the program in the third year. during 2011, a preand post-cohort comparison will be made using measures that evaluate the effect on staff and parents as well as infant development. margot forcada guex, phd, department of pediatrics, university hospital at lausanne, switzerland gave an update on the maternal stress study5 looking at the effect of an intervention program on prematurely born children’s endocrine responses to separation. the infants were randomized to an intervention that included joint observations with parents at 33 weeks, followed by the administration of the neonatal behavioral assessment scale6 and a clinical interview at term, plus sessions of interactive guidance with parents including video recordings. salivary cortisol measures were compared with mothers who reported symptoms of post-traumatic stress at 12 months corrected age. the hypothesis was that the intervention would counteract the tendency for maternal stress to affect children’s stress reactivity. there was a trend in this direction that was not significant; possible reasons were discussed. the infant behavioral assessment and intervention program (ibaip)7conceived and developed by rodd hedlund, med applies the conceptual framework of the synactive model8 and the nidcap9 approach to care to a neurobehavioral developmental support program for high risk infants recently discharged from the hospital nicu/scn. infants and their families begin receiving ibaip intervention when the infant is one month old (corrected age). a team of researchers, karen koldweijn, phd and marie-jeanne wolf, phd, academic medical center, university of amsterdam, amsterdam, the netherlands have been the first in europe to test this intervention approach. in two earlier pilot studies investigating the ibaip, koldweijn and wolf10-11 found that the infant behavioral assessment (iba)12 was a valuable instrument in discriminating differences in self-regulation, and that the ibaip improved scores on the bayley scales of infant development (bsid-ii)13 karen koldweijn, phd presented the most recent results of two ibaip randomized controlled trials. in the first study, infants in the experimental group (n=86) received one hospital visit shortly before discharge from the hospital, and six to eight intervention visits at home, until they reached six months corrected age.14 parents were guided by an ibaip trained pediatric physical therapist to observe their infant’s self-regulatory competence and the child’s attempts to process and explore information during a social or caregiving interaction. parents were also encouraged to offer their infant co-regulatory support and/or modify the environment based upon the infant’s behavioural communication. infants in the control group (n=90) received regular care. developmental and behavioral outcomes were evaluated at six months corrected age with the bayley scales of infant development-ii (bsid-ii). neurobehavioral functioning was evaluated with the infant behavioral assessment (iba) at baseline and at six months corrected age. despite randomization, some differences in neonatal characteristics were found between the intervention and control infants. after adjustment, intervention effects of 7.2 points (± standard error 3.1) on the mental developmental index (mdi) and 6.4 ± 2.4 points on the psychomotor developmental index (pdi) of the bsid-ii favored the intervention infants. the behavioral rating scale of the bsid-ii (p ± .000) and the iba (more approach [p ± .003] and less stress [p ± .001] over time) also favored the intervention infants. the second study presented by koldweijn consisted of follow-up evaluations of both the experimental and control groups, cited above, at 24 months of age.15 development and behavior were evaluated with the bsid-ii and the child behavior check list (cbcl).16 eighty-three intervention and 78 control infants were available for follow-up. after adjustment for differences in perinatal characteristics, an intervention effect of 6.4 points c u r r e n t d e v e l o p m e n ta l r e s e a r c h inga warren, dip cot, msc developmental observer • 2011 • 15 (± standard error, 2.4) on the pdi of the bsid-ii favored the intervention infants. groups did not differ on the mdi or the behavioral rating scale of the bsid-ii, or on the cbcl. however, in post hoc analyses, the investigators found improved motor as well as improved mental development after ibaip intervention in subgroups of children with bpd and children with multiple risks. in addition, significantly fewer intervention infants received paramedical services after 6 months, and they were more compliant with follow–up, which underlines the positive effects of the intervention. further studies are warranted to explore these promising effects of the ibaip in high-risk infants.29 the dutch government is currently supporting the adoption of the ibaip as a standard of care for all high risk preterm infants, with ongoing nationwide ibaip training for all pediatric physical therapists. all studies relating to ibaip as well as those cited above, may be found at: www.ibaip.org; click on “evidence based research: ibaip. in the 1980s a study in vermont trialled the mother infant transaction programme (mitp)17,18 which introduced parents to infant behavioral communication through a series of teaching sessions during and just after their stay on the neonatal unit. this small study was intriguing because the developmental benefits seemed to increase as the children grew up. marianne norhhov, md presented the results of a randomised trial using a modified version of the mitp conducted by a team of researchers at the department of pediatrics, university of north norway and the university of tromsø, norway (146 preterm infants and 57 non-randomized term controls). the intervention consisted of seven in-hospital intervention sessions and four home interventions sessions (at 3, 14, 30, and 90 days after discharge). this study found no significant developmental benefit at two years of age19 but by five years of age the intervention babies had significantly higher iq scores.20 in addition, parenting stress scores showed that both mothers and fathers in the experimental group had much lower stress level than those of preterm controls, and were similar to term controls over the five year period. child rearing attitudes21 were also more positive and parents reported fewer behavioural problems, particularly with attention. the intervention was introduced towards the end of the hospital stay and it was speculated that parents may have been most receptive at this stage when their infant had become more medically stabilized and had developed a more trusting relationship with the nurses. annica ötenstrand, phd, karolinska institute, stockholm, sweden presented the results of a study entitled the stockholm neonatal family centered care study.22 the aim of this study was to increase family participation in the care of their infant. families were randomly assigned to a family centered care group (experimental) or standard care group (control) on admission of the infant (n=386 families and their infants; 186 per group). parents in the experimental group were provided the use of a private room 24 hours a day, from the first day of their infant’s admission to discharge (the room was located on the nursery ward). the infant would then join the family in this room as soon as the infant was medically stable. those parents assigned to the control group received standard care. the primary outcome was the effect on the infant’s length of stay which was reduced by 5.3 days (p 0.05) for the experimental group, most of which was accounted for by time spent in intensive care. this study suggests: 1) that parents who spend most of their time with their newborn may have a greater opportunity to interpret and act on signs of distress and other needs of the infant compared with what is possible for the nursery staff, who have more than one infant to care for; and 2) parental presence may also contribute to better sleep organization which may promote improved brain maturation. in addition, mothers in the experimental group, reported less mental distress at discharge and again at the infant’s three months corrected age after discharge. these presentations were part of a day full of interest and excellent networking opportunities. all the presentations, and also those from the 2009 symposium, are available on the internet: http://web22.abiliteam.com/ability/show/khcichp/abbott_20101118/speed.asp. this will take you to the conference home page; sign in and then click on: “visa.” a second conference on ultra early intervention is scheduled for march 15, 2012. references 1. lagercrantz h, changeux jp. basic consciousness of the newborn. seminars in perinatology. 2010; 34 (3): 201-206. 2. lester bm, tronick ez, brazelton tb. the neonatal intensive care unit network neurobehavioral scale procedures. pediatrics. 2004; 113 (3, pt 2): 641-667. 3. lester bm, tronick ez. history and description of the neonatal intensive care unit network neurobehavioral scale. pediatrics. 2004; 113 (3, pt 2): 634-640. 4. boukydis cf, bigsby r, lester bm. clinical use of the neonatal intensive care unit network neurobehavioral scale. pediatrics. 2004; 113 (3, pt 2): 679-689. 5. forcada-guex m, borghini a, pierrehumbert b, ansermet f, muller-nix c. prematurity, maternal posttraumatic stress and consequences on the mother-infant relationship. early human development. 2011; 87 (1): 21-26. 6. brazelton tb, nugent k. the neonatal behavioral assessment scale. 1995. mackeith press. 7. hedlund r. the infant behavioral assessment and intervention program. seattle, washington: washington research institute, 1991. available at: http://www.ibaip.org 8. als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of neurobehavioral development of premature infants and their parents in the environment of the nicu. in jk sweeney, physical and occupational therapy in pediatrics. new york: haworth press, 1986. 9. als h, lawhon g, brown e, gibes r, duffy fh, mcanulty g, blickman jg. individualized behavioral and environmental care for the very low birth weight preterm infant at high risk for bronchopulmonary dysplasia: neonatal intensive care unit and developmental outcome. pediatrics.1986; 78: 1123–1132. 10. wolf mj, koldewijn k, beelen a, hedlund r, de groot ij. neurobehavioral and developmental profile of very low birth weight preterm infants in early infancy. acta paediatr. 2002; 91:930-8. 11. koldewijn k, wolf mj, van wassenaer a, beelen a, nollet f, kok jh. the infant behavioral assessment and intervention program to support preterm infants after hospital discharge: a pilot study. developmental medicine and child neurology. 2005; 47:105-12. 12. hedlund r, tatarka m. infant behavioral assessment. seattle, washington: washington research institute, 1988. available at: http://www.ibaip.org continued on page 18 16 • 2011 • developmental observer melissa r johnson, phd s u p p o r t i n g fa m i l i e s single–room nicu care: what does it mean for developmental care? in the past several decades, there has been a slow but accelerating trend in newborn intensive care unit (nicu) design toward increasing privacy for infants and families.1-3 for many involved in developmentally supportive, family-focused care, it has always been a mystery why fragile infants and their families seem to represent the last population to be cared for in a manner honoring their individuality and humanity equal to that of any other patient. gradually, however, this picture is changing. as designs have progressed from the antiquated “baby barns” where individualizing the environment was almost impossible, to individual rooms allowing families to be nurtured and to nurture their infant together, many important issues need to be considered by those who provide developmental leadership in the nicu. julie swanson,4 rn, bsn, a developmental educator at st. luke’s regional medical center in boise, idaho, was asked to reflect on the journey in her unit toward more private and peaceful environments. her thoughts are shared below; some of the issues she raises will then be discussed. several years ago our nicu was remodeled and we transformed our unit. we went from a unit of three large rooms with numerous infants in one room to a unit of multiple rooms with a maximum of three infants in one room. we added three rooming-in rooms where parents can stay overnight with their infant while their child is monitored and staff is available for any medical needs the infant might have. the new layout has come with challenges and many benefits for both the staff and the families under our care. the most significant change i have seen is the decrease in sound and activity levels within the nursery. one of the first things people say when they come into our nursery is “it is so quiet here.” this is due to the addition of carpeting, ceiling tiles and interior walls, as well as the ability to close doors. with only a few patients in one room, the infants have limited exposure to fluctuating activity and sound levels. we now may place an infant in a private room for protection from stimulation or to provide privacy for the family. the ability to offer family privacy is of great benefit to the infant and family alike. in our old unit, we had limited ability to change the environment for the infant and family. we could only place one upright chair next to the bed; had only a drawn curtain to offer privacy; and had limited control over the light, sound and activity level within the nursery. now, an infant may experience skin-to-skin holding with both parents seated in large reclining chairs at the bedside, with the lights turned off, the curtain drawn, and the door closed. the family can rest together and they stay for longer periods of time. families are encouraged to decorate the room as if it were their infant’s private nursery room. there are shelves for the placement of stuffed toys, ‘knick knacks” and books; dressers for family and infant personal items; a choice in seating; wall space to hang pictures, and windows to look out of. if there are twins or other multiples, they are all placed in the same room, or adjoining rooms if necessary, so that parents can be with all of their children at one time. in this way the family is available to the infant at all times. it used to be that when an infant was admitted, every staff person, infant and parent experienced this admission. now, this scenario has been alleviated with the remodeling of our nursery. this is wonderful for the infant and family. the creation of our new nursery has, however, been quite an adjustment, and difficult for some of our staff. prior to the nursery remodel, most of the staff could easily observe what was taking place in the nursery and offer assistance when needed. now, the staff must physically take the time to ask for help. one of the biggest concerns for the nursery is staffing. it often takes more staff to care for the number of infants due to the location of each of the infant’s bedside. we try to avoid moving infants from one room to another to help with staffing. however, this frequently occurs due to the availability of staff and their skill level. in addition, the coordination of staff breaks is more difficult because we have a standard that a staff person must be immediately present to respond to the infants’ and families’ needs. each paragraph in ms. swanson’s reflections contains both valuable wisdom and springboards for discussion. to begin with a few key issues, she describes one model on the continuum. in addition to the model of multiple smaller “semiprivate” rooms with several rooms accommodating families with their babies, some units incorporate a limited number of single rooms along with several larger open bay rooms, while still others have accomplished a transition to completely private rooms for all babies and families. the most advanced level of care, to be the topic of a later article, may be the concept of “couplet care” and skin-to-skin holding, allowing simultaneous care of mother and premature baby. the small amount of literature that is emerging on the various models points to advantages and challenges with each model. for example, greer5 notes the possibility that in developmental observer • 2011 • 17 “mixed” models, stresses may emerge as families note that not all infants have access to the same level of privacy and space. as early observational research begins to emerge, however, the advantages of single-room care reflected in ms. swanson’s lived experience are being supported. ambient sound, lighting, and even air quality have been found to show significant advantages in individual rooms.6 the vastly improved privacy provided by single rooms appear to be facilitating increased participation in skinto-skin holding, as well as improvements in breastfeeding success rates, both of which may be expected to have significant positive effects on developmental outcomes and family functioning.6,7 concerns that have been raised, including those noted by ms. swanson, include staffing and their associated cost issues; questions of staff and/or parent isolation; as well as safety issues raised by those who are accustomed to having direct visual observation of infants most of the time. interestingly, early-published observations appear to be indicating that these issues either do not present the problems that were anticipated, or are prevented with good planning. in fact, domanico6 noted several safety and infection control dimensions that favored the infants in singleroom care. it will be very interesting to observe the progress of this model of care and the results for infants and families. perhaps of greatest interest is the thought that the evolution of nicu care will progress toward models that have been suggested by pioneers in sweden,8 argentina,9 and south africa,10 where the unit of care is the mother-baby pair, as intended by human evolution and neurobiology. references: 1. browne j. new perspectives on premature infants and their parents. zero to three. november, 2003; 1-12. 2. white rd, individual rooms in the nicuan evolving concept. 2003; 23 (supplement 1); s22-s24. 3. hauser c. for the tiniest babies, the closest thing to a cocoon. new york times, 5/29/2007. 4. swanson j. personal communication, may 26, 2011. 5. greer, b. nicu’s: why single rooms? 2011. paper presented at the nicq 7/vermont-oxford network conference. 6. domanico r, davis dk, coleman r, & davis bo. documenting the nicu design dilemma: comparative patient progress in open-ward and single family room units. journal of perinatology. 2011; 31, 281-288. 7. lester bm, miller rj, hawes k, salisbury a, bigsby r, sullivan mc, & padbury jf. infant neurobehavioral development. seminars in perinatology, 2011; 35, 8-19. 8. lillieskold, s, & westrup, b. family centered neonatal couplet care: scientific context & implementation in practice “the karolinska way.” 2011. paper presented at neonatal couplet care conference. 9. basso, g. skin-to-skin holding: the argentinean experience. 2009. paper presented at the 19th annual nidcap trainers meeting. 10. bergman, nl, linley, ll, & fawcus, sr. randomized controlled trial of skin-to-skin contact from birth versus conventional incubator for physiological stabilization in 1200 to 2199-gram newborns. acta paedriatica. 2004; 93, 779-785. developmental care in the moment intimacy and room for all photograph by inga warren, dip cot, msc 18 • 2011 • developmental observer we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to joke weilenga, rn, phd at: j.wielenga@amc.uva.nl. c u r r e n t d e v e l o p m e n ta l r e s e a r c h continued from page 15 fa m i ly v o i c e s continued from page 11 13. bayley n. manual for the bayley scales of infant development—ii. san antonio, tx: psychological corporation, 1993. 14. koldewijn k, wolf mj, van wassenaer a, meijssen d, van sonderen l, van baar a, beelen a, nollet f, kok j. the infant behavioral assessment and intervention program for very low birth weight infants at 6 months corrected age. journal of pediatrics. 2009; 154(1): 33-38. 15. koldewijn k, van wassenaer a, wolf mj, meijssen d, houtzager b, beelen a, kok j, nollet f. a neurobehavioral intervention and assessment program in very low birth weight infants: outcome at 24 months. journal of pediatrics. 2010; 156 (3): 359-365. 16. achenbach tm & rescorla la. manual for the aseba preschool forms & profiles. burlington, vt: university of vermont, research center for children, youth, & families; 2000. 17. rauh va, nurcombe b, achenbach t, howell c. the mother-infant transaction program. the content and implications of an intervention for the mothers of low-birthweight infants. clinics in perinatology. 1990; 17(1): 31-45. 18. achenbach tm, howell ct, aoki mf, rauh va. nine-year outcome of the vermont intervention program for low birth weight infants. pediatrics. 1993; 91(1): 45-55. 19. kaaresen pi, rønning ja, tunby j, nordhov sm, ulvund se, dahl lb. a randomized controlled trial of an early intervention program in low birth weight children: outcome at 2 years. early human development. 2008; 84(3): 201-209. 20. nordhov sm, kaaresen pi, rønning ja, ulvund se, dahl lb. a randomized study of the impact of a sensitizing intervention on the child-rearing attitudes of parents of low birth weight preterm infants. scandinavian journal of psychology. 2010; 5(1): 385–391. 21. nordhov sm, rønning ja, dahl lb, ulvund se, tunby j, kaaresen pi. early intervention improves cognitive outcomes for preterm infants: randomized controlled trial. pediatrics. 2010; 126, (5): e1088-94. 22. örtenstrand a, westrup b, broström eb, sarman i, åkerström s, brune t, lindberg l, waldenström u. the stockholm neonatal family centered care study: effects on length of stay and infant morbidity. pediatrics. 2010; 125(2): e278-285. we had survived. he said he was familiar with the nidcap approach. he cited statistics about kangaroo care, parental involvement, and shortened hospital stays as well as decreased re-admittance rates. he shared with me one of the most profound statements that i continue to remind myself to this day, and which would become particularly useful in years to come as we welcomed more children into this world. he said, “the practice of medicine is just that, it is practice, and it is ultimately your decision to allow medical professionals to practice on your child.” abby was discharged after 16 days of intensive care and an additional day in the special care nursery where i was encouraged to room in with and completely care for my bundle of joy. james and i administered all the necessary procedures and medications that would be needed at home. we felt triumphant and confident caring for our baby; quite in contrast to prior experiences, where the predominant feeling of elation at discharge was matched by insecurity about our abilities. oftentimes, making appropriate care decisions; interpreting preterm infant behavior; and attempting to understand the best way to protect and encourage bonding, development and support felt ambiguous at best. today, abigail is a healthy 15 year old who excels in school. the nidcap approach to care has provided parents the priceless gift of confidence and determination, supporting them in their appropriate role as parents despite the daunting cirumstances that may lie ahead of them. nidcap certified professionals and nurseries have gradually helped to change hospital nurseries around the world. health care professionals and medical facilities have steadily come to a more complete understanding of the undeniable positive outcomes of individualized, developmental, relationship-based care…a portal to infant health. over the years as our family has continued to grow, we have experienced the nicu with the birth of each of our other six children. each birth has presented its own special challenges, but we also became aware of the gradual changes in the nursery, and the care provided, that has taken place over the course of the last 18 years. the nicu can be a place that annihilates parents causing indefinable harm to families. with every subsequent nicu we have been a part of over the last 18 years, changes are evident regarding preterm behavioral understanding and support for both the families and the babies. it has been almost a year now since i had the awe inspiring experience of seeing my darling jenna cradle her tiny baby brother in her gentle arms as we sat in the nicu in april. tears fell unrestrained as i was overcome with the realization that my beautiful daughter possessed all the confidence that had been initially ripped from me in those first few days after her birth. it will be a miraculous day when the norm is supporting parents and giving them the gift of confidence to care for these precious miracles born too early. i am of the opinion that the nidcap philosophy of caregiving quite possibly could prevent scenarios of child abuse, failure to bond, failure to thrive, and other such catastrophic events that have an irreversible negative impact on families. i am indescribably grateful for the blessing that nidcap has bestowed upon nearly two generations of our family. developmental observer • 2011 • 19 developmental observer nidcap federation international board of directors and staff the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu assistant secretary/treasurer sandra kosta, ba national nidcap training center email: sandra.kosta@childrens.harvard.edu jeffrey alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org silke mader founder, european foundation for the care of newborn infants email: silke.mader@efcni.org jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu inga warren, dip cot, msc nidcap trainer director, uk nidcap training centre at st. mary’s email: inga.warren@imperial.nhs.uk victoria youcha, edd child development specialist children’s medical associates email: vyoucha@gmail.com rodd hedlund, med director nidcap nursery certification program email: nncpdirector@nidcap.org www.nidcap.org national nidcap training center children’s hospital boston and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey, usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se connecticut children’s nidcap training center connecticut children’s hartford, connecticut, usa co-director: ann milanese, md co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contacts: tammy casper msn, med, rn or linda lacina, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be ålesund hospital nidcap center ålesund hospital ålesund, norway co-director: livellen helseth, rn co-director and contact: unni tomren, rn email: unnitomren@gmail.com become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org/membership.aspx, or email us at nfimembership@nidcap.org by order of establishment n i d c a p t r a i n i n g c e n t e r s 16 • 2020 • developmental observer the barcelona nidcap training center was opened in december 2011 at the same time as the hospital 12 de octubre nidcap training center in madrid. the entire process of making the center ready was possible due to the collaboration between both hospitals and the tireless support of graciela basso, md and heidelise als, phd. currently our center has two sites: the hospital vall d'hebron in barcelona and the hospital dr josep trueta in girona. the three nidcap trainers are fatima camba, estrella gargallo and josep perapoch. our goal is to offer nidcap training in hospitals of neighboring countries and, at the same time, contribute to the implementation of a nidcap-based model of newborn care in all hospitals within spain. collaboration is likely the key word that best defines us as a center. collaboration is one of the main values of our activity. our challenges include the lack of time and financial resources, and perhaps this is a reason that has helped us to take part in some collaborative projects. some of our projects are listed below, as they may serve as inspiration for other teams: • with professionals and friends at the 12 de octubre hospital in madrid, we collaborated through the hera project in broadcasting and training projects for developmental care throughout the country. we also collaborated in different research studies. • with other hospitals of the catalan institute of health and support of administration, we established a working group for the application of nidcap-based newborn care in all hospitals (padeics-nidcap working group). the catalan institute of health is a hospital system providing care for approximately 45% of the very low birth weight newborns in catalonia. • with the groups of parents and professionals of working group hospitals, we held a workshop in 2016 to define the nine lines of nidcap training centers around the world the barcelona nidcap training center barcelona nidcap team doi: 10.14434/do.v13i2.31062 developmental observer • 2020 • 17 improvement in individualized newborn care focused on development and the family. this document is the basis of all the improvement actions that have been used to work together during the last four years. • through collaboration with professionals and families, the “germans” project to facilitate the inclusion of sibilings was started. (https://youtu.be/amiuqhis1ls) • with other hospitals and training centers of the iberian peninsula, we collaborated in eight editions of the "nidcap iberian meeting". • collaborating with administration and the university, we promoted development of a guide for parents of premature newborns, which is distributed in all hospitals. as nidcap has no limits, our projects and dreams are being renewed. these are the challenges we would like to achieve in the near future: • work closely with the hospital sant joan de deu, the other large barcelona hospital that is currently in the process of accrediting itself as a training center, to facilitate the application of nidcap in all the hospitals of the country. • incorporate a new professional nidcap trainer to our team. • obtain administration support for training to achieve the availability of nidcap professionals in all hospitals. • repeat a working day with families. this is currently scheduled for november 17, 2020, yet may be rescheduled due to the coronavirus pandemic. • gain the ability to apply the fine2 training program. • finish a project started two years ago to offer introductory training in developmental care in an online format. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 2022 • developmental observer • 23 l ittle is ordinary about an ordinary day in a nicu. without a break, 24/7, technological and biomedical wizardry is combined with expert applications of other, “low-tech” tools and “no-tech” methods. together, it works: babies born as early as 23or 24-weeks survive and thrive. miraculous outcome is almost ordinary. how do these miracles happen? let’s start with one element in the miracle-making formula: the element is human touch. no technology needed. our target article, a recent study by fatollahzade1 was designed to ask whether an intervention termed gentle human touch (ght) would reduce pain during the suctioning procedure commonly needed to keep open the airways of premature infants equipped with an endotracheal tube. 34 preterm infants (born at 2734wks) comprised the study population. cleverly, this research team utilized the on-going care regime as a testbed, knowing that the suctioning procedure, vital to breathing support of the intubated neonate is potentially painful. their “crossover” design refers to an efficient and statistically powerful approach in which each baby is tested with and without the experimental intervention. order was counterbalanced, meaning half the babies received the ght intervention during suctioning on the first trial and routine treatment (no intervention) during the next need-based suctioning. the other babies also experienced both conditions, but in the reverse order. the ght intervention was administered to infants positioned prone in a gently flexed posture. the researcher cupped one hand around the infant’s head while cupping the other hand around the infant’s bottom. ght was provided for the duration of the suctioning procedure. using the premature infant pain profile (pipp) protocol, a 15-sec-long pre-suction baseline assessment was made, followed by a 30-sec-long post-suctioning assessment. the pipp yields a numerical score of infant pain in three ranges (mild to severe). it is considered well-validated and is used widely in research.2 the results were impressive. with standard care, 85% of the infants showed moderate pain responses to the suctioning procedure. ght reduced the occurrence of moderate pain responses to 65%. severe pain responses were manifested in about 9% of the control trials and ght reduced these to about 3%. such results are a first step toward adding gentle human touch to the list of non-pharmacological methods of pain management in the nicu. many of us are aware of the powers of skin-to-skin contact (kangaroo maternal care3,4) as well as the efficacy of holding5, facilitated tucking,6-8 nursing,9 non-nutritive sucking,10 and oral sucrose,11, 12 each a method for pain mitigation, and more. our target article is a new contribution. it builds on past knowledge of ght and touch; it newly addresses the procedural pain of suctioning; and it expands the range of pipp for assessment. there is more to learn about the scope, the magnitude, and unexplored outcomes of using ght. though preliminary in several ways, fatollahzade et al.1 is an elegant study, particularly when viewed in the light of basic biomedical ethics. importantly, they noted that ght is safe. it did no harm. by explicitly registering that no harm to the baby came from the procedure, they formally recognized a vital dimension of their method. in other words, they addressed the familiar dictum, primum non nocere, or ‘first, do no harm’. but, it is not enough to deem something as ethically-sound because risk is minimal. there is an ethical imperative to examine whether procedure actually “does good”?13 in fact, fatollahzade and her colleagues reported that ght reduced pain responses. gentle human touch during suctioning provided actual, active benefit. stay with me now: “not to harm”, in the language of ethics is non-maleficence [mə-‘le-fə-sən(t)s]. the principle of non-maleficence is alive and well throughout medical ethics. after all, premum non nocere. infants cared for in the nicu deserve pledges of non-maleficence. all our patients do. but, again, it is not enough simply to avoid doing harm. in addition, ethical practices demand that we promote and do good. “to do good” in the language of ethics is beneficence [bə-‘ne-fə-sən(t)s]. a beautiful word for a beautiful principle. s c i e n c e d e s k the importance of doing dual diligence jeffrey r. alberts, phd indiana university, nfi science committee, associate editor for science target article: maryam fatollahzade, soroor parvizy, mandana kashaki, hamid haghani & mona alinejad-naeini (2020) the effect of gentle human touch during endotracheal suctioning on procedural pain response in preterm infant admitted to neonatal intensive care units: a randomized controlled crossover study, the journal of maternal-fetal & neonatal medicine. doi: 10.14434/do.v15i1.33787 24 • 2022 • developmental observer whereas non-maleficence is mainly a prohibition against harm, beneficence has at least three forms, each of which we should examine as part of our awareness of doing good. as such, beneficence includes (a.) doing good, (b.) preventing harm, and (c.) removing harm. in the nicu we can say the coin of the realm is ethical treatment of each baby. there are two sides to this coin: non-maleficence and beneficence. as two sides of the same coin, they are inseparable. so, as we hold this coin in our hand, we must continually turn it and examine each side. such diligence is due to both sides. for this reason, i favor the label of dual diligence, stipulating the obligation to honor both principles – beneficence and non-maleficence. illustrative examples of non maleficence without beneficence abound. look no further than the previous issue of the developmental observer!14 dr. ita litmanovitz, a neonatologist and nidcap trainer, contributed a thoughtful and expert commentary to the science desk column. ita examined a technological tour de force report,15 in which extremely prematurely born neonates were monitored for their first 72 hours with a combination of cerebral regional oxygen saturation (crso2) via near infrared spectroscopy (nirs), amplitude-integrated eeg (aeeg), functional echocardiography (echo), further supported by head ultrasounds. the authors concluded that such multimodal monitoring “is feasible, safe, and well tolerated by extremely prematurely born infants in the first 72 h after birth”. true, yes, but remember dual diligence! dr. litmanovitz’s commentary guides us through a set of critical considerations of the ocean of data that were collected -without harming the newborns’ skin or increasing adverse events. despite the investigators’ rationale, the multimodal measures did not prevent ivh or reduce adverse outcomes. more serious, however, was that to make these measurements, there was an obligatory, 72-hr separation of infant and mother! it is well-documented that such separations can have both immediate and long-term negative effects both on the baby and mother. dr. litmanovitz cited of the costs of losing early postnatal mother-infant contact, while seeking some still-elusive benefits of predicting a hemorrhagic event. awareness and attendance to dual diligence – recognizing and documenting both non-maleficence and beneficence can provide the clarity we need to realize ethical care. dual diligence is not only fully compatible with nidcap practice, it is embedded within it. in caregiving, in formulating treatment protocols, and in evaluating research, it is imperative for us to examine both avoiding harm and doing good. doing dual diligence is a foundation of ethically-guided practice. nicu miracles of successful development arise from a combination of high-tech, low-tech and no-tech. we do not know how they combine into success, but we do know that they are all involved, and i bet that it is not via simple addition of separate factors. each modality supports the other. high-tech medical wizardry is crucial. so is parental love and human touch. remember always that an ordinary day in a nicu is made of the extra-ordinary. ordinarie in old french, for rule or ordinance, as in rules that prescribe forms of action, gave us the english word ordinary. think of the protocols you follow that make an ordinary day. in this way, everything you do makes miracles almost ordinary. look for and see the duality of non-maleficence and beneficence present in a simple protocol. in developmental care, they are the core of the miraculous. references 1. fatollahzade m, parvizy s, kashaki m, haghani h, alinejad-naeini m. (2020) the effect of gentle human touch during endotracheal suctioning on procedural pain response in preterm infant admitted to neonatal intensive care units: a randomized controlled crossover study, the journal of maternal-fetal & neonatal medicine, doi: 10.1080/14767058.2020.1755649 2. stevens bj, gibbins s, yamada j, et al. (2014) the premature infant pain profile-revised (pipp-r): initial validation and feasibility. clinical journal of pain, 30(3):238–243. doi: 10.1097/ajp.0b013e3182906aed 3. mosayebi z, javidpour m, rahmati m, et al. (2014) the effect of kangaroo mother care on pain from heel lance in preterm newborns admitted to neonatal intensive care unit: a crossover randomized clinical trial. journal of comprehensive pediatrics, 5(4):1–6. doi : 10.17795/ compreped-22214 4. johnston c, campbell-yeo m, disher t, benoit b, fernandes a, steiner d, inglis d, zee, r. (2017) skinto-skin care for procedural pain in neonates, cochrane database systematic reviews, 2 (2): cd008435. doi: 10.1002/14651858 5. riddell rrp, racine nm, gennis hg, turcotte k, uman ls, horton re, kohut sa, stuart jh, stevens b, lisi dm. (2015) non-pharmacological management of infant and young child procedural pain. cochrane database of systematic reviews, doi.org/10.1002/14651858. cd006275.pub3 6. axelin a, salantera s, lehtonen l. (2006) ‘facilitated tucking by parents’ in pain management of preterm infants— a randomized crossover trial. early human development, 82(4):241–247. doi.org/10.1016/ 7. alinejad-naeini m, mohagheghi p, peyrovi h. (2014) the effect of facilitated tucking during endotracheal suctioning on procedural pain in preterm neonates: a randomized controlled crossover study. global journal of health sciences, 6(4):278-284. doi: 10.5539/gjhs. v6n4p278 8. obeidat h, kahalaf i, callister lc, et al. (2009) use of facilitated tucking for nonpharmacological pain management in preterm infants: a systematic review. the journal of perinatal and neonatal nursing, 23(4):372– 377. doi: 10.1097/jpn.0b013e3181bdcf7 9. shah ps, herbozo c, aliwalas ll, shah vs. (2012) breastfeeding or breast milk for procedural pain in neonates. cochrane database of systematic reviews, 12: cd004950. 10. vu-ngoc h, et al, & duong pdt. (2020) analgesic effect of non-nutritive sucking in term neonates: a randomized control trial. pediatrics and neonatology, 61 (1): 106-113. doi: org/10.1016/j.pedneo.2019.07.003 11. blass e, watt l. (1999) sucklingand sucrose-induced analgesia in human newborns, pain, 83(6): 611. doi. org/10.1016/s0304-3959(99)00166-9 12. kassab m, anabrees j, harrison d, khriesat w, chen s. (2017), sweet taste drinks effects on reducing injection pain and associated stress among infants: a meta-analysis of randomized controlled trials. open journal of pediartrics and neonatology, 1(1): 1-12. 13. beauchamp tl & childress jf. ( 2013), principles of biomedical ethics, seventh ed., new york: oxford university press. 14. litmanovitz i., (2021) combined multimodal cerebral monitoring and focused hemodynamic assessment in extremely low birth weight infants – potential benefits or potential costs? developmental observer, 14(2): 1820. doi: 10.14434/do.v14i2.33001 15. deshpande p, jain ríos dr, bhattacharya s, dirks j, baczynski m, mcnamara kp, hahn c, mcnamara pj, shah p, guerguerianb am. (2020) combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants. neonatology, 117:504–512. doi: 10.1159/000508961 2021 vol. 14 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “all things are bound together. all things connect.” chief seattle suquamish and duwamish first nation chief greetings from the editor welcome to our first issue for 2021. let us hope that this year will be kinder, and we may start to move forward and heal together. looking back on 2020 several themes have emerged from the impact of the pandemic. first, during the challenges of covid-19 restrictions the strength of families and staff are demonstrated through several abstracts from the 31st nidcap trainers meeting. the group from modena showed if staff feel offering kangaroo care is safe then parents become involved with less stress. the team from beirut revealed that despite restrictions of covid-19 kangaroo sessions can increase. the group from rimini nicely demonstrated that if staff are supported, they in turn support parents to be involved in their baby’s care. the second theme focussed on how we strive to improve what we do. the graven’s group presented the important standards for infant and family developmental care to guide our practice, and we heard about how the plan-do-study-act (pdsa) quality cycle can be used to change practice by inga warren and her team. lindsay gilmore, a mother, in her insightful article heartbreak and hope during the pandemic gives us an understanding of the stress families experience. we learn about the success of innovation through the little readers read-a-thon from therese gisondi. and julia giesen returns with another perceptive poem in poets corner. despite the challenges we have all encountered this past year, the uk nidcap centre demonstrates how covid-19 impacted on the work of their centre and how they adapted to ensure their goals were met. inga warren, senior nidcap trainer received a commander of the british empire (cbe) in recognition of her work with premature infants and training. we learn about the amazing work in serbia in giving nidcap and developmental care a focus. we can learn from these interesting articles and the innovative ways we all strive to improve the care and experiences of the babies and their families. kaye spence am senior editor – developmental observer adjunct associate professor/ clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university/australia table of contents editorial ...................................................... 1 abstracts .................................................... 2 little readers read-a-thon .................. 10 global perspectives ............................... 12 family voices .......................................... 14 nidcap training centers around the world ........................................................ 18 poet's corner .......................................... 20 nidcap on the web ................................ 22 issn: 2689-2650 (online) do 14:1 full issue doi: 10.14434/do.v14i1.31806 abstract edition kaye spence, am doi: 10.14434/do.v14i1.31807 nidcap care in the moment connecting through challenges 2019 vol. 12 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “we are all visitors to this time, this place. we are just passing through. our purpose here is to observe, to learn, to grow, to love… and then we return home.” australian aboriginal proverb in conversation with heidelise als kaye spence, am in may this year i had the opportunity to have a conversation with dr. heidelise als in auckland, new zealand as she was the invited keynote speaker at the council of international neonatal nurses (coinn) 10th international conference. it was such an honour to have her speak and network with over 400 neonatal nurses from 23 countries. in a quiet corner of the hotel café we had a most enjoyable conversation. as heidelise sipped on her cappuccino she shared many stories, reflections and insights into nidcap and the impact it has on newborn infants and their families. i learned so much about this remarkable woman and the passion that has shaped her life. i would like to share parts of this conversation as i asked about her experience at the conference to trigger some thoughts about nidcap. ks: after three intense days at the conference would you like to share your overall impressions? ha: when i was invited and saw the conference theme, enriched family – enhanced care, i knew i wanted to attend. it was so in tune with the philosophy of nidcap. i was greetings from the editor it is with pride that i present this issue of the developmental observer. it has been a fascinating few months for nidcap and in this issue we showcase the expansion of the global work of nidcap. earlier this year i had the pleasure of attending the coinn (council of international neonatal nurses) international conference that was held in auckland, new zealand. this time it was particularly memorable as dr heidelise als was one of the invited keynote speakers. i must say heidi was in her element as nurses from many of the 23 countries represented sought her out for photographs and short conversations. she was always surrounded by groups of enthusiastic nurses, many of whom had studied her work in their university courses and knew what an honour it was to meet her. i took the opportunity to have a conversation which is included in this issue. this was enlightening for me as i have known heidi for nearly 20 years and yet this conversation revealed a different side to her. this issue also features stories about nidcap training, from the point of view of a novice nidcap trainer and a nidcap trainee challenged by her advanced practicum. these stories from dalia silberstein and kristen james nunez challenge us to think about our own practice and training. hopefully these stories may encourage others to share theirs. we also feature a profile on dominque haumont who provides us with table of contents in conversation with heidelise als ........ 1 editorial ...................................................... 1 family voices ............................................. 4 a novice trainer's look: shining moments and early lessons learned ...... 6 advanced practicum experience .......... 8 nidcap profile ......................................... 11 global perspectives of developmental care belize .............................................. 14 nidcap training centers around the world ................................................... 16 the science desk .................................... 18 published resources ............................... 20 nidcap on the web ................................ 25 dr. als giving her keynote address at the council of international neonatal nurses (coinn) 10th international conference. continued on page 2 continued on page 3 nidcap® is a registered trademark of the nfi, inc. ©nidcap federation international, 2019. “men are wise, not in proportion to their experience, but in their capacity for experience. this is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being a force of nature…i am of the opinion that my life belongs to the whole community and as long as i live it is my privilege to do for it whatever i can. …. the harder i work, the more i live. i rejoice in life for its own sake.” g. b. shaw, man and superman: a comedy and a philosophy. epistle dedicatory to arthur bingham walkley. penguin books, 1958. p18. jazz has a spontaneity and vitality in which improvisation plays a role. the individuality of the performing jazz musician plays a key role.1 travis jackson states that jazz is music that includes qualities such as improvising, group interaction, developing an individual voice and being open to different musical possibilities.2 in jazz, the performer will interpret a tune in very individual ways, never playing the same composition exactly the same way twice. depending upon the performer’s mood and personal experience, interactions with fellow musicians, or even members of the audience, a jazz musician may alter melodies, harmonies or time signature at will. jazz, is often characterized as the product of egalitarian creativity, interaction and collaboration, placing equal value on the contributions of the composer if there is one, and the performer, and adroitly weighing the respective claims of the composer and the improviser. similarly this is the case in nidcap at its best. a nidcap nursery is a setting where interactions among equals make a harmonious and always evolving whole, exhilarating to behold and affirming to experience. while analogies are doomed to fall short in most cases, contemplation of the differences between jazz and classical music may be helpful when tempting to grasp and appreciate the differences between a traditional nursery and a nidcap nursery. in classical music the composer sets the direction and rules. the players in the performing orchestra make every effort to play the written music as true to its notation as their talents permit. yes, there may be slight differences in phrasing from one orchestra to another and one conductor to another, yet a specific piece of classical music is recognizable wherever it may be played. playing classical music draws attention to flawlessness, virtuosity, and accuracy and highlights mistakes. it may serve as a metaphor for the nursery that is guided by a set of protocols, reinforced by hierarchical leadership, and recognizable as such from location to location. perhaps its size, underlying tempo 2012 vol. 5 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “love and compassion are necessities, not luxuries. without them humanity cannot survive.” dalai lama “love is the way of all the babies in the world!’ christopher duffy, 10 april 2012 continued on page 2 table of contents message from the nfi president .............. 1 family voices ............................................. 3 nidcap profile .......................................... 5 current developmental research .......... 6 nidcap training centers from around the world ...................................... 8 feeding the most fragile ....................... 10 supporting families ................................ 13 seeking the evidence for a system change in a surgical nicu .................... 16 nidcap exhibit display.......................... 19 developmental resources .................... 20 developmental observer contributor transitions ................................................ 21 message from the nfi president of jazz, nidcap and the process of becoming 2 • 2012 • developmental observer and complexity might vary, the number of players differ. yet the piece played is the same. a nidcap nursery is more like a piece of jazz music. playing jazz draws attention to creativity, give and take, and relationship. it is a nursery with an interactive individuality that is recognizable in the way that jazz music is easily recognizable as jazz; yet each set played is unique, new and different, developed each time in its dynamics and harmonies, solos and resolutions depending on the individuality and relationship of voices with one another of those playing together. each player trusts the other; the interplay is the essence rather than the goal. the infants and families set the themes, as it were, that penetrate and are returned to over and over again, no matter the crescendo of surrounding voices and themes of the staff. around the infant and family themes the contra-points surge and are resolved again and again yet differently each time. this makes it a challenge to move from a traditional to a nidcap nursery. it may be as difficult as moving from being an accomplished classical musician to becoming a jazz musician. as nidcap trainers teaching, guiding and helping nurseries, i.e. complex jazz ensembles, to come into their own, to trust themselves as partners, trust their interplay and continuously become anew, and create themselves, trainers must have trust and confidence themselves as well as patience and vision. teaching the other the basic nidcap ingredients and tools is essential until these ingredients are mastered and have become second nature. such ingredients include among others, astute observation of the interplay of the social and physical environments and the individual infants’ behavior; tuning of writing to convey information that retains the emotional dimension of the interactions observed; deriving of specific and guiding interpretations that engender creativity in developing suggestions for next steps; and attunement and emotional presence to become astute in listening and proactive guidance. once these are achieved and a sufficient core of such basic skills is available the transformation process from the traditional to the nidcap nursery is inevitable. moving forward and creatively becoming is the emerging new theme. much has been written about the process of change and the ways it may be facilitated. the nidcap trainer’s role becomes that of imparting the confidence that everyone counts and is accountable as individual for who he or she is. that presents the teacher’s opportunity and yet also the main challenge. to paraphrase sanford meisner3: the nicu is “an arena where human personalities interlock in the reality of doing.” the “elements in a person’s training that will make him [or her] a distinctive… [nidcap professional] are… the most delicate factors that a teacher can impart.….one can use standard principles and textbooks in educating people for law, medicine, architecture, chemistry or almost any profession – but not for [nidcap]. for in most professions every practitioner uses the same tools and [techniques] while the [nidcap professional’s] chief instrument is himself [or herself ] and since no two persons are alike, no [universal] rule is applicable to any two [persons] in specifically the same way.” nidcap training is ultimately only successful in the oneto-one shaping and tuning of teacher and student. the nidcap nursery certification criterion scales (nnccs)4 provide a kind of script, a loosely assembled accumulation of themes, sketched for consideration and contemplation of those invested in the care of infants and families in the nicu. they are far from a prescription, textbook or detailed ‘how to’ manual. rather they represent a vision, a set of themes pictured from various angles and vantage points. once sampled, they are intended to become the intriguing impetus and catalyst for the nicu, to tune to and be realized into a live process of continued becoming. thus the timing of the introduction to this collection of themes and sketches poses a delicate issue for the teacher; that the players have come to embrace the realization of the dynamic nature of the process of nidcap and of themselves as the agents and instruments in the process, likely is an important prerequisite. the players’ intrigue and fascination with the promised beauty of the whole to be created as their own is the motivation best suited for the timing. confidence to get to the level of active daily becoming is the threshold when success is assured. heidelise als, phd a semi-annual publication of the nidcap federation international © 2012. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer references on page 22 developmental observer • 2012 • 3 debra paul, otr fa m i ly v o i c e s a mother’s story in her own words, dina cansinos-levy’s story dina and rafael cansinos-levy, and 3 year old sister, noa’le, are the proud family of yael, who was born at 27 weeks gestation, weighing 890 grams. yaeli’s family lives in spain and her birth came as a total surprise when her parents and sister were in israel for a family visit. what was originally scheduled as a brief trip to israel, scheduled only to last a few days, ended up lasting several months after yaeli’s unexpected birth at the meir medical center, in the city of kfar saba, israel. yaeli’s mother, dina, shares her very powerful story with us in this column. dina’s story reminds us what it is like for families to endure such a prolonged hospitalization in an intensive care nursery and the importance of nurturing the infant and family in their journey. in another two days, our daughter yaeli will celebrate one year of life outside the womb. in honor of her birthday, and out of our deep gratitude and recognition of the newborn intensive care unit team at the meir medical center, my husband, rafael built a website so that parents of preemies could have a place to go. it was just as important to my husband that the fabulous nicu staff that took care of our daughter, also have an easy way to check on the progress of infants who had graduated from the nursery. despite the fact that a year has passed, it is still difficult for me to write about our days in the nicu. maybe one day i will find the strength to cope with these times and write about the experience. in the meantime, i have mustered up the energy to share some chapters of the book about yaeli’s birth. over a year ago, when i was 25 weeks pregnant, rafael, noa’le and i travelled to israel for a passover visit. it was a great and fun time! two weeks after we had landed, on a friday morning, i was planning a shopping trip to a supermarket while rafael stayed with our daughter in a place called udim. i took advantage of the free time to go for coffee with two of my dear friends, noam and nurit. while we were at the coffee shop, i suddenly jumped with pain. nurit, who would later be my marvelous birth coach, said to me “it looks like a contraction.” of course, i had no idea what she was talking about, and we parted with our goodbyes and my friends left for a weekend in jerusalem. i continued on to the supermarket, which was, of course, one of the last activities i would do for a while. after spending over two hours at the supermarket, i returned home with my 5 kilos of chicken, which i remember was on sale, and did not feel well. it was obvious that something was going on in my body. i lay on the couch with a bottle of mineral water, but it did not help. after a few hours and before supper, i decided that i should go get checked out to ensure everything was okay. i just wanted to be on the safe side and i called udit, one of my beloved friends, to give me a ride to the hospital. when i got in the car, i announced to her that we were just going to “pop in” to the laniado hospital for a moment. fortunately for me, she refused to take me there, and insisted on driving me to the meir medical center instead. what luck for all of us that udit took me to meir. after spending some time at the hospital eating sweets, counting fetal movements, and being monitored, i was sure that i would be discharged. but the doctor insisted on following protocol and did an ultrasound. in the meantime, a more complicated case arrived. we waited patiently in the waiting room. several hours later, we were called into a darkened room and the doctor announced, to my surprise, that my cervix was totally effaced. after tears and making silly comments like “i have a plane to catch”…and “i’m not a good enough human being to be a mother to a preemie, etc.,” it became obvious i was going nowhere but the delivery room to receive my first dose of celestone yaeli “kangarooing” with her mother during her first few days in the nicu. 4 • 2012 • developmental observer (an injection that helps a infant’s lungs to mature), and of course, to be monitored. this is how our 79 day nicu stay began. we had many long exhausting days, and days of feeling helpless. it is a silly cliché but the truth is, you would have to be there, in that situation, to understand. i am not sure that i can adequately describe the experience. i was admitted to the high risk ward. the following day, sabbath, i received my second and what would be my last dose of celestone. now the task at hand was to try and hold off delivery as long as possible. but my pains continued, and although no contractions were identified on the monitor, it was obvious that something was going on. it seemed to be just a matter of time until i would give birth and as one of the residents put it “every minute counts.” so i decided i would keep my legs tightly together and try and prolong the inevitable. in the meantime, important staff from the nicu came by to give me a general idea about what was happening and what to expect. it was obvious that i understood nothing. i had my own thoughts about it all. yaeli had ideas of her own (even then she had a stronger will than mine) and against all odds on may 3, 2010 at 6:00 pm, she was born at 27 weeks gestation weighing 890 grams with apgars of 9 and 10. also present during my short labor in the delivery room was my professional and favorite labor coach, and older sister, rachaeli. it was such a speedy delivery that the doctor asked me to wait until an incubator could arrive. it was stressful delivering a preemie baby… not only was the pregnancy finished abruptly, but my baby was snatched away immediately, which did not help. luckily, i had asked the doctors earlier what would happen and they explained to me that my baby would be taken away at once to be cared for when she was delivered. still, when she entered the world so quickly and was taken away crying and wrapped in a warming blanket, i was left with a feeling of shock. from that moment on, i counted the minutes until i could walk (not “walk” but run) to the nicu and see yaeli. many beloved visitors came to the recovery room to see me, including rafael. he had not gone through the labor and delivery with me and was able to go see yaeli and name her and then came back to report to me about how perfect she was. during this time my sister-in-law, dalit took care of noa’le and we will forever be in debt to her for being there to help during this time and on several more occasions. two hours later, i ran to the nicu myself (and i could, since this short pregnancy made my body unaware it had been pregnant or that i had just delivered a baby). i entered the nicu which would become my home for the next two and-ahalf months…and there i saw yaeli, lying naked in the incubator. seeing her like this will always remain one of the most difficult memories of my life. she was such a tiny baby and it seemed that any similarity to a newborn term baby was purely coincidental. i remember telling people that asked about her, that she was a close relative of e.t.’s! i remember thinking, she is mine but i did not get to hold her after she was born. however, by the next day, i was able to hold yaeli skin to skin (the fabulous “kangaroo care”). eventually, i started to count the hours that i held her, which just proves how many hours i did not. there are not enough days for us to live together to lessen the feeling of abandonment i felt at that time. the horrible fact was that every day i left her i felt that i abandoned her again. i knew logically and rationally that rafael and i were doing the best we could but that feeling of abandonment remained extremely strong…that’s just how it was. yaeli was like a panther, and did not seem to be bothered by anything at all. she was strong and insisted on breathing on her own. yaeli seemed to think that the nicu was some type of health resort! she slept and gained weight. our good fortune, which began when we arrived at the meir medical center, continued on. you see, there are significant differences between various nicu’s. despite yaeli’s severe prematurity at less than 30 weeks and weighing less than a kilo of sugar, our nicu days were viewed as “easy” ones. there were no severe complications or frightening incidents. the staff in the nicu would often pass by yaeli’s incubator and say to us “she’s a cutie pie” and move on. my husband rafael thought this statement was hebrew medical terminology. most of the time there was nothing major for the staff to report about her. as i already said…we were lucky. but despite our “easy” nicu stay, i think back and realize that these were some of the hardest days of our lives. we are so thankful to everyone who helped us get through this experience more or less in one piece. even though yaeli is no longer in the nicu, the nicu is not out of us…other parents of nicu graduates claim that some part of the experience always stays with you. nonetheless, we don’t spend each and every moment dwelling on yaeli’s prematurity. yaeli has grown to be an adorable and “normal” infant. even though it is her first birthday (although in real terms she is 9 months corrected age according to calculations), she is perfectly healthy. knock on wood! yaeli and her family relaxing at home. developmental observer • 2012 • 5 maría lópez-maestro, md, phd n i d c a p p r o f i l e carmen rosa pallás, md, or keka, as all who work with her know her, has wanted to look after infants ever since she can remember. she worked diligently on her studies and she always stood out because of her passion for medicine. from very early on she became convinced that to have a good life, the first few days of human beings are fundamental; we need to get to know mothers’ and infants’ needs better and look after them quickly and with suitable methods. dr. pallás opted in 1984, the start of her professional career, to train at the 12 de octubre university hospital which had opened four years earlier. located in a populated area in the south of madrid, the 12 de octubre has a population with modest to impoverished social and financial resources. the choice of this hospital was not by chance; the 12 de octubre stood out from the remaining hospitals in madrid, because it maintained a policy in the maternity and pediatrics departments of parentcentered care, as an important part of its care provisions. this approach was the right one for dr. pallás, the care children and their families should receive in spite of the significant complexity of the hospital 12 de octubre neonatology unit, which sees all kinds of patients, especially the most serious, with a total of 19 intensive care beds and 30 intermediate care beds. when her residency was completed and once incorporated into the neonatology unit, dr. pallás considered creating and opening a follow-up clinic as a top priority. she put all her energy into this goal and with the help of her colleagues she achieved the creation of a follow-up clinic in 1990 for children up to seven years of age, who had previously been seen in the neonatology department. dr. pallás’ brilliant professional career and her commitment were rewarded in 2000 with the renia sofia award for research on the prevention of deficiencies by supporting the development of children who had been born too small and too soon. in the study which won the award, she brought together10 years of observation and clinical research in the context of a follow-up program. dr. pallás has published a large number of papers in the most important scientific publications in spain and the european union. since april 1996, she has been an associate professor of health sciences, attached to the department of pediatrics of the faculty of medicine, “12 de octubre” university hospital, madrid complutense university. from her initial steps in the department of pediatrics she threw herself into the well being of the children, always concerned about implementing new care methods beyond technology. one result of her concern was the creation of the first spanish population registry for children affected with cerebral palsy in the hospital 12 de octubre area; included in the collaboration network surveillance of cerebral palsy in europe (scpe). the aim of this network was to develop a central database of children with cerebral palsy in order to monitor trends in birth weightspecific rates, to provide information for service planning and to provide a framework for collaborative research. in 2004, dr. pallás, after several interviews with families decided to publish antes de tiempo. nacer muy pequeño (ahead of time. being born very small, exlibris ediciones), a book whose purpose is to improve the information received by parents of premature infants and dealing with their real needs. in 2005, dr. pallás began to collaborate with dr. natalie charpak, who visited the unit several times, collaborating with the team for correct implementation of kangaroo care, already in place but lacking a suitable protocol. since then kangaroo care has been the cornerstone of the care offered by the hospital. keka has worked continuously with dr. charpak on different publications and conferences. in 2008, dr. pallás participated in the development of the european perinatal health report: better statistics for better health for pregnant women and their babies (available at www.europeristat.com). after 16 years of experience as an assistant doctor, dr. pallás became head of the neonatology unit. she was supported and recognized by her colleagues for her involvement and contribution to the unit’s quantitative and qualitative development and growth. one of the fruits of her labor was ensuring that the hospital 12 de octubre led the way for developmental care in spain. since dr. pallás became head of the unit she has continuously insisted on offering children the best care and the best attention to their families, this is one of the hallmarks of the unit today. to tackle the new challenges, she believes that the participation and undertaking of all members of the unit is essential, for doctors and nurses to work together harmoniously and in tune with one another; she has always given an essential role to the training of personnel as the driving force for change. she has favored the mobility of professionals to personally enrich them carmen rosa pallás, md continued on page 22 6 • 2012 • developmental observer involving fathers in the care of the high-risk newborn: what could we be doing better? last fall, i was asked to design a research column for the developmental observer. i thought ok how fun; that would be easy! well it hasn’t been so easy since i believe this is a tough audience. that being said i decided to format the column into an evidence-based brief. individualized developmental care encompasses a wide array of interventions. for each column, i will begin with why i believe this topic deserves attention (background). what this research adds to what is already known about the developmental care issue or the particular intervention (objective conclusive statement that sets-up a focus). then a summary of the evidence found will follow with a discussion. in addition, i will provide recommendations for integration into practice. when appropriate i will highlight who the stakeholders might be and whether they might support integration of the intervention or not and why. my overall effort will be to provide a compelling argument for integration of the practice or not, given the state of the current science. please feel free to contact me or provide feedback about what you would like to read or want to see in this column. i am definitely open to suggestions. background much of individualized developmentally supportive intervention with newborns and high risk infants focuses on supporting and improving the mother-infant interaction. even family-centered care initiatives often have a fundamental focus on this dyadic relationship yet, the role of fathers in the family is changing in our society and many families are not as traditional as they once were. overall the role of fathers is evolving to one that is much more involved with childcare and childrearing than was evident in past generations. objective supporting fathers during the crisis of newborn intensive care is important but what are the research findings to help us provide the best care to fathers? what are their needs during intensive care and how can we foster their participation in care? it is my premise that fathers want to participate but often don’t know how and may feel they cannot ask because they need to be strong, and supportive of their partner. stress may actually be greater in fathers during newborn intensive care because fathers often have several roles to juggle during a time when their emotions may be stretched to their limits. in general, fathers initially may have greater responsibility for supporting their partner, communicating with friends, families and professionals while simultaneously providing for their household while their newborn may be struggling to live in the newborn intensive care unit (nicu). methods a search of the recent literature in pubmed and cinahl for studies, particularly about fathers and the care of their newborn in the nicu, were used to provide the evidence to support the recommendations made from this review. this review is not comprehensive and represents the findings of only a few recent studies. a systematic review about the experiences of fathers in the nicu was published in pediatric nursing in february of 2009. deeney et al.,1 found only seven studies that focused primarily on the experiences of fathers who have a baby in the nicu. they found that fathers cope and respond to the experience differently from mothers and their burden may be heightened because of the stress they feel as they struggle to balance both hospital, home and work responsibilities. fathers reported considerable anxiety related to the need to be everything to everyone. fathers of preterm infants were found to have less contact with their infant and this appeared to decrease their attachment to their infant. the recommendations of deeney et al. were to support and increase caregiving and holding of the infant by fathers in the nicu as soon as possible. these authors also recommend that more research needs to occur to increase the understanding of the role of fathers especially as the roles of both parents in our society are changing with parenting/childrearing becoming a much more shared responsibility. summary of evidence the findings of three studies are highlighted in this review. these studies were not included in the previously published systematic review. mackley and her team2 examined the emotional status of fathers of infants born before 30 weeks gestation in the nicu. a convenience sample of thirty-five fathers from a single nicu participated in the study and completed two self-report questionnaires (center for epidemiologic studies depression scale [cesd] and the parent stress scale [pss:ih]) three times during the course of their infants’ hospital stay. fathers of infants who were expected to die or had congenital anomalies were excluded from c u r r e n t d e v e l o p m e n ta l r e s e a r c h jacqueline m. mcgrath, phd, rn, fnap, faan developmental observer • 2012 • 7 the study as well as those who could not speak or read english. initially, 60% of the participating fathers had elevated depression scores and although these scores decreased overtime, 35% of fathers still reported having elevated depressive symptoms at discharge. the rates of depression reported in this study are higher than previous studies reported in the literature; however most other studies include infants in the nicu of all or varied gestations not just infants less than 30 weeks gestation. total stress scores from the pss:ih were also initially high and did not change overtime, however, for fathers who were also depressed these scores were significantly correlated. interestingly fathers’ depressive symptoms did not correlate with infant illness severity. socioeconomic factors were found to be highly related to depressive symptoms while being married was found to be somewhat protective (odds ratio of 1.70; 95% confidence interval of -3.49-0.07) over time for the participating fathers. although no data additional data were gathered during this study from mothers, it appears that fathers in a more stable relationship (married) managed their depression and stress better, as compared to unmarried fathers. two qualitative studies have also been recently published. thomas et al.,3 conducted a qualitative descriptive study with five canadian first time fathers who had a very low birth weight (vlbw) infant in the nicu in the last two years. all infants were discharged at the time of the interviews and all were at home with no major neurodevelopmental handicaps. four of the participants were married and one was living with his partner. all of the fathers described the first week of their child’s life as overwhelming and traumatic. the uncertainty during that time was fraught with many questions and they also reported a sense of powerlessness. however, these same fathers reported that they took on more caretaking over time than they had anticipated doing, because they felt the need to do something, and they felt the need to support their partners. five factors were found to influence the development of their self-efficacy as a parent: 1) learning from professional role models and female family members; 2) learning by doing; 3) personal beliefs and values; 4) praise and positive reinforcement and 5) the wellbeing and health of the infant. although these fathers were of several cultures, all of them had a “good” nicu outcome which could have affected the results of the study. the results of the thomas study are comparable to a qualitative study conducted by lindberg and associates4 in sweden. eight fathers were interviewed about their experiences with having an infant in the nicu. two themes emerged from the data. first, fathers shared their experiences about becoming a “real father.” they talked about how being in the nicu provided them with an opportunity to get to know the baby and over time, as the infant became more stable, to become attached to the infant. fathers who were able to visit more often spoke about gaining confidence in caring for their infant and about how they would not change the experience of having a preterm infant. they felt the gains were somehow worth the other experiences in the nicu. many of the fathers expressed how the birth of their child had changed their values of life and how spending time with their child also changed their relationship with their partner in a way they had not anticipated. none of the fathers who participated in this study spoke about being stressed or depressed, however the focus of the study appeared to be more about their relationship with their baby and partner and not more globally on how they were balancing or managing things outside the hospital setting. interestingly, none of those issues were discussed by any of the fathers in this study. recommendations for practice the depressive symptoms and stress of fathers during the initial nicu crisis must be acknowledged and treated as needed. screening of both fathers and mothers for depressive symptoms needs to be routine in the nicu environment. those parents that have elevated depression scores need to be referred for counseling and treatment. parents with depressive symptoms must be treated by staff with the same respect as all parents regardless of whether they are mothers or fathers. these parents may need more support from staff than parents who are not suffering from depression, as these parents need to know that being stressed and depressed is often a “normal” response to the crisis of having an infant in the nicu. sometimes the first step in treating depression is accepting that it is real and requires treatment. fathers need assurance that it is not considered “weak” to ask for or to need help during this difficult time. they also need to know that there presence in the nicu is important and that their participation in caregiving is supported and encouraged. asking fathers “how” they would like to participate rather than “would” they like to participate is a better way of encouraging them to be involved. asking in this way says, “we want and expect you to participate in some way – you (fathers) can choose how, and your participation is important to the recovery of your newborn infant.” conclusions both fathers and mothers need our care as much as their infants who are critically ill. finding strategies to better meet the needs of fathers, as well as mothers, needs to be a greater focus of our care. references: 1. deeney k, lohan m, parkes j, spense d. experiences of fathers of babies in intensive care. pediatric nursing. 2009; 21(1): 45-47. 2. mackley ab, locke rg, spear ml. forgotten parent: nicu paternal emotional response. advances in neonatal care. 2010; 10 (4): 200-203. doi:10.1097/anc.0b013e3181e946f0 3. thomas j, feeley n, grier p. the perceived parenting self-efficacy of first-time fathers caring for very-low-birth-weight infants. issues in comprehensive pediatric nursing. 2009; 32: 180–199. 4. lindberg b, axelsson k, ohrling k. adjusting to being a father to an infant born prematurely: experiences from swedish fathers. scandinavian journal of caring sciences. 2008; 22: 79–85. 8 • 2012 • developmental observer liv ellen helseth, rn and unni tomren, rn n i d c a p t r a i n i n g c e n t e r s f r o m a r o u n d t h e w o r l d the nicu at ålesund hospital is situated on the west coast of norway. it is a small, level three unit with room for 14 infants; four of them receive intensive care. we have nurses, neonatologists, pediatricians, a social worker, a speech therapist and a physiotherapist working in the unit. in march 2011, we moved into the new children’s hospital and our new nicu which has single, two-bed, and family rooms that parents can live in with their infants. we would like to share with you our experience of implementing nidcap and becoming a training center. one of the things that has been essential for the process is the constant positive support from our leadership and also the medical staff. our head nurse describes the ålesund nicu staff, both nurses and physicians, as very open to change and new knowledge. our nidcap history it all started after one of our nurses attended a neonatal conference in washington dc in 1992. when he returned to the nicu, he started to cover the incubators, but this lasted only through his shift. a couple of years later the idea of implementing the nidcap approach to care within our nursery began to emerge as a serious possibility. for the next few years we heard several speakers presenting on nidcap and some of our nurses visited falun in 1996, where agneta kleberg, rn and bjørn westrup, md worked. inspired from our meeting with these two nidcap professionals, a developmental group was formed. we had regular meetings and the goal was to start implementing the nidcap approach to care. when agneta kleberg and two of her colleagues came to ålesund to speak about nidcap for two days, the process really grew. the similarity between the culture and health organization in norway and sweden often has made us look to our neighbors for inspiration and help during the implementation process. from 2001 to 2005, six of our nurses became nidcap professionals under nidcap trainers anna karin asp, rn, ba from sweden and karen smith, rnc, bsn, med from the usa. after becoming nidcap professionals, the urge to learn more grew stronger. in 2006, the two of us started working towards becoming nidcap trainers and developing a nidcap training center with the guidance of trainer karen smith, and senior master trainer heidelise als, phd. after one of dr. als’ and karen smith’s visits during our training, we decided to arrange a congress. the title of the congress held in june 2008, was “nidcap – a link between neonatal intensive medicine and child psychology” and it drew speakers and an audience from around the world. the congress was a great success. we were thrilled to see so many of our nidcap colleagues in norway. one of the biggest changes in the unit during these years was the acceptance of the family and its important role in the life of the infant. we have moved from seeing the parent as a person that could participate, to being a natural collaborator in the care of the infant. the parents are welcome in the unit 24 hours a day and they are encouraged to spend as much time as possible together with their infant. we recognize that parents are the most important persons in their infants’ life and that they are the infants’ primary caregivers. during the process we have been working to support families in understanding their infants. guiding the parents and staff at the bedside and using the apib as a way of increasing awareness of the infants’ strengths and sensitivities, has been a very powerful tool. the interaction between the infant, its family and the caregiver, combined with our new knowledge continuously increases our awareness of the importance of nidcap. we continue to learn from our experiences in the implementation of the nidcap approach to caregiving and we have become more reflective in the way we take care of the families. we see that parents are more confident and have begun to develop a relationship with their infant from the very beginning. along with our training education, we have collaborated with three other nicus in norway to translate several of the nidcap documents into norwegian. this process is funded by the children’s nursing foundation. we have found that having training documents in one’s own language is most helpful, and we would like to share this with our trainees. nidcap norway, ålesund training center from left: hilde austad foss, rn (nidcap norway nursing director), liv ellen helseth, rn and unni tomren, rn (nidcap trainers). developmental observer • 2012 • 9 during our training, we have also found that there has been increased interest in the nidcap approach to care in norway. we have had requests for training from several nicu’s, especially from the nursing staff. more recently, the nursing staff has been attracted to the nidcap way of caring for premature and ill newborn infants. the human, ethical and developmental implications within the framework of nidcap have received broad support within the nursing staff and also from the families in the nicus. the description of the infant’s language via the nidcap approach to caregiving, and the way to view each infant as an active individual participating in his own development from the start, appears to make sense. however, some physicians are reluctant to implement developmental care. they believe that the published nidcap studies have been relatively few in number; with a small number of participants enrolled in each study; and with questionable research methodology. there is a disagreement in how much power and importance nidcap should have, if the program is feasible, and if one should use resources in implementing the nidcap method. in ålesund, 16 % of the nurses in the unit are nidcap trained. during the training process we have had support not only from our leaders, but also from many of the physicians. one of our neonatologists, who also is the medical director of the nicu, lutz nietsch, md was one of the driving forces behind the development of the nidcap training center. in the process he completed his nidcap training with karen smith, and is the first physician in norway to become nidcap certified. lutz nietsch is now the director/medical director of our new nidcap center. the unit’s assistant head nurse, hilde austad foss, is the nursing director and has been closely involved in the education process. during our training period, the annual nidcap trainers meetings have been an inspiration. each year interesting topics have been presented that are useful in our training efforts. topics, ideas and a lot of support, which we brought home to share with our colleagues in the nursery. as a result of attending the nidcap trainers meeting in cincinnati, 2011, our nidcap group celebrated the “world prematurity day” on november 17, 2011 for the first time. it was a great success. preterm born infants and their parents came from around our country. some of these families travelled for many hours to come and celebrate with us, including families with their infants, toddlers, teenagers and even adults, who were born premature. an exhibition displayed some equipment from our nicu including a fully equipped incubator, and premature sized infant clothes. this was very popular amongst the older children, teenagers and adults. a very touching moment occurred when the mother of a 30 year old man, who was born prematurely, came to this celebration, bringing a marzipan tart decorated with a picture of her son during his stay in the nicu. his birth date and “thank you for all of your help,” was written on the cake. it was such a humbling experience and a reminder of how much the work we do means to the families involved. another program we, together with our colleagues, have found very interesting and helpful is the nidcap nursery certification program (nncp). we recognize that this program is a useful tool in supporting the implementation of nidcap and integrating this approach throughout the nicu. nncp assists us to identify areas of need within our unit as well as supporting our efforts to address these needs. in june 2011, we completed our training and are currently working to raise funds for our new center. we are looking into how to get nidcap training recognized within the norwegian education system. in the meantime we are communicating and providing information to potential students, planning to start training soon. we have a network that includes all the norwegian nidcap professionals. this supports our efforts to keep each other updated. giving lectures in other units in the country has also been a way to maintain and make new connections. the theme nidcap and child psychology continues to be a topic of great interest here in ålesund. we are collaborating with the child psychologists follow-up clinic, “team small,” to ensure that every family that might need additional support after going home is offered an opportunity to be enrolled in the program. this spring we conducted a two-day long workshop on research in early intervention for nordic countries. the goal was to create more interest and awareness on this topic. this provided us with the opportunity to have several great speakers from the nidcap federation international to present at this workshop. we hope to inspire more research in the field. as new nidcap trainers we have found that the presentation of evidenced-based research on developmental care helps to support nidcap education here in norway. lutz nietsch, md, nidcap norway director and medical director. ålesund training center’s celebration of world prematurity day, november 17, 2011. 10 • 2012 • developmental observer the acquisition of eating skills in the nicu is a major focus of staff and families, in large part because discharge to home is directly correlated with the ability to take in adequate nutrition.1 therapeutic and nursing research has often focused on accelerating the acquisition of full oral feeding, with little attention paid to the long-term effects of interventions. given the poor long-term outcomes in both eating and growth, it is reasonable to advocate for a shift in the focus of interventions towards improving the quality of the feedings (skill and parent-child interaction) and building a strong foundation for later eating. recently several articles have been published that integrate the principles of nidcap and acknowledge the role of experience on the development of eating skills. this article is a brief synopsis of three articles, published by ross and philbin2, philbin and ross3 and browne and ross.4 background a variety of therapeutic interventions have been proposed in the literature, with the majority of intervention studies focused on either oral stimulation or non-nutritive sucking. oral stimulation is generally a protocol driven stimulation program involving five-fifteen minutes of tactile input to the face, lips, gums and tongue of the infant. typically, this stimulation is provided for ten sequential days, in infants as young as 29 weeks gestational age (ga). while results have shown a decrease in the interval between initiation of oral feeding attempts and the acquisition of oral feedings, the majority of published reports demonstrate neither: 1) a decrease in gestational age at the time full oral feedings are attained; nor 2) a decrease in length of stay.5-9 the only article to show a shorter length of stay (two point six days) was published in advances in neonatal care and is fraught with methodological problems.10 the author conducted oral stimulation on ten infants for five minutes per day for seven consecutive days, beginning at 29 weeks ga, with nine infants in the control group. methodological problems include a statistically significant difference in birthweight between the two groups. all statistically significant in terms of outcomes was lost when birthweight was entered as a covariate; however, the author took the variable out of the equation and published the results. the abstract does not mention this very important point, and misleads readers into thinking that this intervention can save thousands of dollars in hospital costs. despite this (and other methodological problems), this article will likely become the newest in a growing list of studies that garner a great deal of attention using interventions that do not include the infant as a partner in a relationship. another study showed a difference between control and experimental groups using the n-trainer (a pulsating pacifier), but the control group data suggests that the control group lagged behind in the mean age of acquisition of full oral feeds most often cited in the literature.11 unfortunately, many professionals working in the nicu do not critically read the available literature. rather, they read the abstracts and then quickly implement programs such as oral stimulation because they are easy to implement without training and without the need to understand the behaviors of the infant. while these programs may be easy to implement, the available research has not included the effect of the stimulation on the stability and behavioral organization of the infant, nor presented any information on the long-term eating outcomes for infants graduating from the nicu after the use of these programs. through the nidcap research, we know that supporting the stability and the emerging competence of infants improves outcomes – both shortand long-term. the experiences of the infant create neural pathways that build behavioral repertoires, and the theoretical framework of this research can be applied to feeding. the long-term feeding/eating and growth outcomes in infants who were premature and in the nicu are poor, with over half of parents reporting stressful mealtimes where young children are gagging, vomiting, coughing, and refusing to eat.11-12 samara and colleagues found eating problems were more common among the preterm than the comparison group, with an odds ratio of 3.6.13 it is reasonable to argue that the actions within the nicu contribute to these poor outcomes. professionals in the nicu should consider supporting parent and infant competence in feeding and eating to improve the long-term feeding the most fragile: supporting feeding opportunities in the nicu erin ross, phd, ccc-slp developmental observer • 2012 • 11 outcomes for infants in their care. three articles recently published attempt to shift the focus from accelerating the acquisition of full oral feedings, to building a foundation for long-term feeding success, based upon the synactive theory of infant development and the theory of neuronal group selection.15, 16 in clinics in perinatology, browne and ross published a review article that describes the neurodevelopment of eating, and includes a framework for the development of eating.16 the baby regulated organization of subsystems and sucking (bross) framework serves two purposes. the first is to highlight the necessity of baseline physiologic, motor and behavioral state stability for enjoyable and safe feeding and eating experiences. we know that infants with medical comorbidities have the longest transition time to full oral feeds, and the most difficulty in eating after discharge.17-18 the bross also focuses on maintaining stability while being held, and subsequently while sucking on a pacifier and progressing to eating. the second purpose of the bross is to identify developmental milestones in the acquisition of eating skills. the eating steps in the bross are taken from a combination of clinical experiences and research findings related to oral-motor patterns observed in preterm infants. the first of these oral-motor steps is entitled “obligatory,” and describes infants who begin to suck and swallow fluid and do not initiate any respiratory effort – losing all stability in the process. the next three steps have been described by several researchers and represent a progression from: 1) an immature sucking pattern that consists of three-five sucks/burst alternating with a period of spontaneous respirations (alternating); to 2) a more mature pattern where the infant intermittently and inconsistently takes a small breath within the sucking burst, allowing the sucking burst to lengthen (intermittent); and finally to a mature suck-swallow-breathe pattern with breathing smoothly occurring within the sucking burst (coordinated). unique to the bross is the final step, entitled “integrated.” the defining characteristic of this step is the integration of infant social interaction with the feeder during a feeding. until an infant is able to eat and engage with the feeder, the process of eating skill development is not considered complete. data presented at the physical and developmental environment of the high-risk newborn in 2002, revealed a significant positive correlation between bross stage and gestational age. however, observations using the bross have shown that caregiver handling and decisions either improve or interfere with the infant’s attempts at regulation and eating. infants often demonstrate more mature eating stages when fed by a primary caregiver (preferably the parent), using supportive techniques designed to support skill development. the two articles published in the journal of perinatal and neonatal nursing were a culmination of many years of training professionals and parents in the nicu by erin ross, phd, ccc-slp as well as preparatory work for an nih grant. in 2006, barbara medoff-cooper, phd, rn and kathleen philbin, phd, rn sought the collaboration of ross for an nih grant focused on evaluating the effectiveness of training staff to focus on enjoyable and positive feedings, with a goal of improving feedings both in the nicu and after discharge. ross has been providing one-two day trainings for therapists and nurses for several years, and as part of the evaluation of the effectiveness of the training for the nih grant, developed the first feeding decision algorithm, entitled supporting oral feeding in fragile infants (soffi). the soffi was designed to: 1) be a method for assuring that the training would result in a change in the way infants were being fed; and 2) measure whether the decisions that the bedside caregiver was making were similar to a “gold standard” – which would be provided by intermittent reviews of videotaped feedings by the principal investigators. the two appendices (flow rate and pacing) were also part of the training algorithms. while the initial nih grant was not funded, soffi proved to be a valuable teaching tool. ross began piloting it during trainings and collecting feedback on its usability. in 2008, philbin collected pilot data and submitted a second nih grant focused on improving shortand long-term feeding outcomes. at that time, she advocated for the creation of the reference guides that are the companion soffi article, by compiling the training information as well as developmentally supportive care information into a manual and included appendices for the interventions of flow rate and pacing. the soffi algorithm takes the information from the bross regarding subsystem stability as the foundation of eating, and leads the caregiver through a series of decision-points. the algorithm is designed as a flowchart. as such, the caregiver begins at the “start,” and is guided through the decisions regarding overall stability of the infant and into decisions regarding the stability of the infant to eat at the current feeding time. stability is defined as stability across the systems of the synactive theory of infant development. at each decision point (identified by a diamond shape), if the infant is not engaging in the task or is not stable, the algorithm directs the caregiver to stop the feeding or interaction, re-stabilize (or co-regulate) the infant if necessary, and determine the need to: 1) provide the feeding using an ng or og tube; or 2) implement specific, evidence-based interventions to improve the quality of the feeding. once the caregiver determines that the infant is ready to attempt a nipple feeding, the algorithm directs the caregiver to offer the feeding (either breast or bottle feeding) and determine the infant’s response. if the infant responds with a significant loss of stability, the feeding stops and the focus shifts to co-regulating the infant. however, if the infant is maintaining stability, the feeder assesses whether the infant is participating and actively trying to nipple. if the answer is “yes,” the caregiver assesses efficiency and skill. the additional algorithms of flow rate and pacing (appendix a and b respectively) guide the caregiver through the process of determining the need to change the flow rate of the bottle nipple or to pace the feeding. throughout the entire feeding, the algorithms direct the caregiver to attend to the behavioral cues of the infant and to respond to any signals of distress/instability by increasing the support. 12 • 2012 • developmental observer the decision points and the interventions within the soffi are supported by published literature as well as clinical experiences. professional caregivers at a midwest children’s hospital have used the soffi to determine its effectiveness in improving feeding outcomes not only in the nicu with preterm healthy infants, but also with medically complex preterm and term infants. they enrolled a convenience sample of 57 infants prior to the soffi method training, and collected data regarding feeding/eating parameters within the hospital as well as three-five months after discharge. the nursing leadership and educators then attended the two-day nicu training provided by ross, based upon the soffi method. they used the soffi algorithm and created a 60-90 minute presentation for their staff (including 150 nurses), that was provided as part of the mandatory yearly education. after all of the staff attended the training, 72 infants were enrolled in the post-soffi training group. data from this research study presented at the physical and developmental environment of the newborn conference in florida, january 24-28, 2012, indicated that the length of stay and gestational age at oral acquisition did not differ when the focus shifted to quality of feedings. however, several behaviors that have previously been reported in the literature to be problematic (gagging, arching, spitting/vomiting, general feeding problems) as well as use of services (seeing a feeding specialist) were lower by parental report. the nursing/therapy research team is in the process of writing several publications highlighting these and several additional findings. drs. browne, philbin and ross are joined by many nidcap professionals as well as a growing number of nicu nurses and therapists who are striving to bring the theoretical foundation of the synactive theory of infant development and the respect and understanding of the process of eating development to the nicu. the hope is that we can shift the focus from accelerating this developmental process to improving the experiences of both the parent and the infant. skill becomes the focus, resulting in feedings that are comfortable, enjoyable experiences for both the parent and the child. through skill acquisition, volume and growth are achieved. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. nidcap nursery certification program (nncp) the nidcap nursery certification program (nncp) under the auspices of the nidcap federation international (nfi) recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of the newborn individualized developmental care and assessment program (nidcap) for infants and their families. nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd hedlund, med, nncp director at: nncpdirector@nidcap.org or 785-841-5440. references on page 22 developmental observer • 2012 • 13 melissa r. johnson, phd s u p p o r t i n g fa m i l i e s agneta kleberg, rn, phd is a developmental nurse, nidcap master trainer, and training center co-director at the karolinska nidcap training center and the astrid lindgren children’s hospital in stockholm, sweden. she has written about a variety of topics including premature infants, family support, and most recently, primary care in the nicu. she was asked to share her thoughts about the broader meaning of primary care to the parents of infants in the nicu from the perspective of a nurse researcher, educator/trainer and clinician, in the following article. how many adults can one family manage? this question was sent out via the nidcap listserve and many thoughtful statements emerged about how we organize “staffing” around the family of the preterm infant. from my experience of working in scandinavia, europe and as a member of the nidcap federation international i am familiar with different “cultures” and their ways of organizing newborn intensive care. our primary team views the infant as an active participant in caregiving and social interactions, and the parents as the primary caregivers. this core concept of family-centered care is not controversial. although our health care systems differ around the world, human needs are the same. the newborn individualized developmental care and assessment program (nidcap) and kangaroo mother care (kmc), two evidence based, familycentered care models, have contributed significantly to “give back the baby to whom he or she belongs.”1,2 implementation of necessary intensive care in the framework of family-centered care requires knowledge and understanding of the infant, parents and family development, and an appreciation of the interplay of the infant’s medical issues with the developmental process. to realize this potential a strong system is fundamental. the nicu leadership must: 1) take responsibility for the application of evidence-based safe medical and nursing care; 2) provide time and resources for education, implementation and evaluation; and 3) delegate this responsibility to health care professionals to carry out this work, as well as support and encourage this process. each individual caregiver needs knowledge, and time to reflect on his or her actions. the multidisciplinary team needs to encourage and acknowledge each other’s achievements as well as support each other as they address the day-to-day challenges of implementation. working towards a common goal is complex, and changing systems is challenging. in this article i will stress essential issues to support implementation of family-centered care with the purpose of reducing the number of caregivers parents have to interact with during their stay in the newborn intensive care nursery. families should not be expected to interact with a multitude of caregivers—they become frustrated with each introduction of a “new face,” or when encountering a new source of infomation about their infant’s condition, or ways of caring for their preterm infant. mothers often complain about conflicting advice on how to care for and feed their infant. implementation of familycentered care is a long process. “the shift from being an expert of caring for preterm infants to becoming an expert of supporting parents in caring for their infant,” is from my experience, the biggest and most significant issue for the bedside nurse. health care professionals need time to reflect on this change, as well as knowledge to increase their understanding and support during this paradigm shift. mothers and fathers are primary caregivers of their infant, the most important persons in their baby’s life. they are recognized by their baby via their familiar smell and voice, and caressing hands and warm bodies. these factors support the evolving relationship between the infant and his or her parents. to facilitate this relationship, parents need to be supported as the primary nurturers and caregivers of their infant, the natural role of all parents. the bedside nurse is responsible for medical and technical care procedures, as well as supporting the infant’s wellbeing and development. the “new paradigm” includes guiding and supporting parents in observing and interpreting their infant’s behavioral cues as well as responding to their needs. to support and guide parents of preterm infants, health care professionals need knowledge of both the normal pregnancy and the process of becoming a parent prematurely. during the course of a full-term pregnancy, the pregnant woman becomes increasingly psychologically prepared to become a mother to her newly born infant. stern et al.3 describe three stages of the pregnancy: 1) “the physical fetus growing in the mother’s womb;” 2) “the motherhood mindset developing in the mother’s psyche;” and 3) “the imagined baby taking shape in the mother’s mind.” the father-to-be is also experiencing parallel psychological and emotional preparation.3 rafael-leff 4 distinguishes the pregnancy in three trimesters, where “the focus shifts from pregnancy, to fetus, to infant.” after a preterm birth “the infant needs the biorhythm and pulsations of the mother as well as her milk, and the mother needs the infant to complete her pregnancy.”4 the mother of a preterm infant will lose the last part of pregnancy, including the final psychological and emotional preparation of becoming a mother. the “real infant” arrives when she is still highly involved with the infant of her dreams and wishes. the infant’s need for technological and medical support for survival may compromise the mother’s feelings of competence and possibly interfere with the parent-infant relationship.3 the evolving parent-infant relationship may become disturbed by several other factors when an infant is born prematurely. incubators and medical care, necessary for the infant’s 14 • 2012 • developmental observer survival, result in the physical separation of the preterm infant from his or her parents. the preterm infant may not have opportunities for sustained eye contact or auditory input from the parent,5 that is often readily available to the healthy term infant. furthermore, during the intensive care period, the infant’s energy may be depleted as he reacts to painful medical procedures and overwhelming environmental stimuli; resulting in even less energy for parental interaction. the nicu staff may at times suggest to parents that the caregivers understand their infant better than they do. these circumstances are less than ideal for parents and their infant to begin the process of developing an ongoing relationship. several investigations have suggested that mothers experience premature birth, and the nicu environment, as very traumatic and stressful. these mothers often express feelings of anxiety, guilt, anger, helplessness, and fear that their infants will not survive or survive with disabilities.6-9 such feelings may negatively influence the parent-infant relationship and may be further weakened by the preterm infant’s faint behavioral cues and lower alertness and responsiveness.5,10-13 becoming a parent to an infant with very low birth-weight (vlbw) involves several stages, starting in an unfamiliar and intimidating environment of the nicu and continuing home after discharge. mchaffie14 identified six maternal emotional states, three while the mother was in the hospital (anticipatory grief, anxious waiting and positive anticipation) and three following discharge to home (anxious adjustment, exhausted accommodation and confident caring). heermann and colleagues15 analyzed how mothers developed from being viewed as an “outsider” to becoming an “engaged mother.” these researchers suggest that this transition occurs in four steps: 1) the mother’s focus of attention transitions from the often intimidating high-tech environment of the nicu and the expertise of the nurses, to focusing just on her baby; 2) from feelings that “the baby belongs to the nurses” to actively “claiming the baby as her own;” 3) from passive to an active caregiver role; and 4) from silent observer to the role of advocacy. jackson and colleagues9 interviewed both mothers and fathers. the parents stated that their experiences of having an infant born prematurely as a synthesis of alienation, responsibility, confidence and familiarity. both mothers and fathers described concern for their child. these researchers also found that the mothers expressed a need for participation and control of care, while the fathers expressed more confidence in delegating the care to the nicu staff. somewhat contradictory results were found by others: lundqvist and jakobsson16 found that fathers expressed feelings of being outsiders and wanting to be active participants in the care of their infants, whereas lundqvist and colleagues17 described fathers’ experiences as a process from feelings of distance towards feelings of proximity. jackson18 concluded that the parents’ identity in a preterm birth was a process of integrating the unexpected start of parenthood into the parents’ sense of identity and their way of being. important to this process, was the health care staff ’s support and acknowledgement of the parental role as well as their interactions with their infant. however, despite the staff ’s good intentions to support and encourage the parents’ partnership in the care of their infant, and to view parents as the primary nurturers and caregivers of their infant, parents may continue to feel like “outsiders.” there are several books, published by swedish parents, that describe such experiences. to advocate “good care models” is easier to do, than to carry out “good care.” health care professionals need time and forums (e.g., discussion groups, reflective supervision and processing) to reflect on the concept and meaning of “family-centered care.” time to reflect on: 1. obstacles in the hospital system that thwart the implementation of family-centered care; 2. the “culture” and “value base” of the unit; 3. the role of the staff to support parents in their role as parents; and 4. how to decrease the number of professionals that the family is required to interact with on a day-to-day basis. as health care professionals, we have the responsibility to work from an evidence-based model and with a humanistic approach. to clarify these goals, open communication with time for reflection is essential. as a nidcap trainer, i meet with units that have open forums once a week; others that meet 15 minutes at the end of each shift; as well as units that have no formal forum for reflection. units that have a multidisciplinary leadership with a strong desire to support caregivers in their new professional role are – according to my opinion more successful in implementation of family-centered, individualized, developmentally supportive care (infants and parents interact with fewer health care professionals). the infant’s and family’s need for privacy is acknowledged and respected. the nidcap and kmc models are based on theoretical frameworks that support parents during their stay with their infant in the hospital. it is very common in scandinavia for parents to have a bed close to their infant’s incubator and later on, as the infant develops, the parents stay with their baby in a family room on the unit. however, this is still not a guarantee that parents will not have to interact with “too many adults” but it is an important aspect of the “primary caregiver model.” parents who stay with their infant on the unit are more likely to assume their rightful role as the primary nurturer and caregiver of their infant, and to advocate for private times to be together; a mother, a father, an infant together... a family together. parents, however, may still perceive that they must wait before being allowed “access” to their infant. with this knowledge, we have to find ways on how to organize “staffing” that will support primary caregivers for each individual family. how we act matters. this means that we also need time to reflect during all interactions with the baby and the parent. examples of issues to reflect on include: • how many caregivers does each family interact with? • how do we approach infants and their parents? • feelings of efficacy versus lack of control. • how do parents view us in our professional roles: as “experts?” “primary caregivers?” or “facilitators?” developmental observer • 2012 • 15 developmental care in the moment a father and his son, together. photograph by melissa barnes • do we see parents as “visitors” or “primary caregivers and partners in the care of the infant?” in a swedish study of mothers of full term newborns, four types of attitudes among health care professionals were identified: the “regulators;” the “facilitators;” the “disempowering;” and the “breastfeeding opponents.”19 the parents, cared for by “facilitators,” appeared to talk more to their infants, were more likely to perceive the infant as their own, enjoyed breastfeeding, and understood their infant better.20 nursery leadership is challenged to take responsibility for providing “a few facilitators for each baby and family.” compassion and humanity is the foundation of good and safe care. our challenge is to see the parent and infant as fellow human beings and to combine science and a humanistic approach—to see and meet the whole person. references: 1. als h. reading the premature infant. in e. goldson (eds), developmental interventions in the neonatal intensive care nursery. oxford university press, new york. 1999:18-85. 2. charpak n, ruiz jg, zupan j, cattaneo a, figueroa z, tessier r, cristo m, anderson g, ludington s, mendoza s, mokhachane m, worku b. kangaro mother care: 25 years after. acta paediatrica. 2005; 94: 514-522. 3. stern d, bruschweiler-stern n. the birth of a mother [074753649x]. bloomsbury, london. 1998. 4. raphael-leff j. pregnancy the inside story [1855752573]. karnac, books 2001. 5. als h, butler s, kosta s, mcanulty g. the assessment of preterm infants’ behavior (apib): furthering the understanding and measurements of neurodevelopmental competence in preterm and full-term infants. ment retard dev disabil. 2005;11: 94-102. 6. affonso d, hurt i, mayberry l, haller l, yost k, lynch m. stressors reported by mothers of hospitalized premature infants. neonatal netw. 1992;11:63-70. 7. wereszezak j, miles m, holditch-davis d. maternal recall of the neonatal intensive care unit. neonatal netw. 1997;16:33-40. 8. redshaw me, harris a. maternal perception of neonatal care. acta paediatr. 1995;84: 593598. 9. jackson k, ternestedt b-m, schollin j. from alienation to familiarity: experiences of mothers and fathers of preterm infants. j adv nurs . 2003;43:120-129. 10. als h, duffy fh, mcanulty gb. behavioral differences between preterm and full-term newborns as measured with the apib system scores: i. infant behav dev. 1988;11:305-318. 11. minde k, whitelaw a, brown j, fitzhardinge p. effect of neonatal complications in premature infants on early parent-infant interactions. dev med child neurol. 1983;25:763-777. 12. stjernqvist k, svenningsen nw. neurobehavioural development at term of extremely lowbirthweight infants (less than 901g). dev med child neurol. 1990;32:679-688. 13. eckerman co, oehler jm, medvin mb, hannan te. premature newborns as social partners before term age. infant behav dev. 1994;17:55-70. 14. mchaffie he. mothers of very low birthweight babies: how do they adjust? j adv nurs.1990;15:6-11. 15. heermann ja, wilson me, wilhelm pa. mothers in the nicu: outsider to partner. pediatrnurs. 2005:31:17–181. 16. lundqvist p, jakobsson l. swedish men’s experiences of becoming fathers to their preterm infants. neonatal netw. 2003;22:25-31. 17. lundqvist p, hellström-westas l, hallström i. fathers lived experiences of caring for their preterm born infant. journal of pediatric nursing 2007; 22:490-497. 18. jackson k, ternestedt b-m, magnuson a, scholling j. quality of care of the preterm infantthe parent and nurse perspective. acta paediatr. 2005;00:1-9. 19. ekström a, widström am, nissen e. process oriented training in breastfeeding alters attitudes to breastfeeding in health professionals. scand j public health. 2005: 38: 424-438. 20. ekström a, nissen e. a mother’s feelings for her infant are strengthened by excellent breastfeeding counseling and continuity of care. pediatrics. 2006.118 (2): e309-14. the 23rd annual nidcap trainers meeting september 29th – october 2nd 2012 sopwell house, st. albans, uk by invitation only. 16 • 2012 • developmental observer implementation of nidcap® into a surgical neonatal intensive care unit (snicu) has been met with many challenges. the required system changes need the effort of all staff and a commitment to the nidcap philosophy. the initial challenge was to incorporate nidcap philosophy, observations and care-planning for newborns who require surgery within the first month. the snicu is an environment of constant change where infants undergo life-saving surgery for major birth defects, and their families face many life threatening conditions and situations. each year, the infants admitted to the unit come from a mix of ethnic backgrounds. length of stay ranges from two to ninety days, with an average stay of ten days. antenatal referrals account for approximately 30% of the patients admitted, the remainder are postnatal diagnosis or referrals from other nicus for surgical interventions. in the snicu, the professional staff consists of neonatologists, advanced medical trainees, junior medical doctors on newborn intensive care rotation, registered nurses, clinical nurse specialists, nursing management and support personnel and an allied health team of a social worker, an occupational therapist and a physical therapist. in addition there are about 10 specialist teams (e.g. surgery, cardiac, neurology, genetics) who visit the unit routinely and undertake daily rounds. this number of personnel makes the implementation of nidcap a real challenge in terms of education and awareness. in order to meet the challenge of providing an environment where nidcap becomes a standard model of practice, first the appropriate evidence was sought. the snicu is an active research center where the focus of the research program has been on behavior and development of the surgical infant and their families. therefore the evidence sought came from research outputs and provided a focus for the implementation of practice change. a reflective model was used (figure 1) where: organizational challenges and barriers were identified; research outputs were used to provide a background for further integration into practice; specific components of care were examined on the basis of nidcap observations of the past and current trainees; and feedback from nidcap consultations with the trainer were incorporated into a model for systems change. the current organizational systems were examined and a decision was made to accept the fact that some things cannot be changed. for example: 1) the unit design and layout were fixed in the current configuration of four open bays and two isolation rooms with no funding available for modifications; 2) visiting specialist surgical and medical teams remain part of the system and were identified as a particular challenge for education and awareness of the model of care; 3) patient allocation to nurses was based on patient acuity and nursing skills; 4) staff shortages necessitated continual recruitment of staff and the levels of experience and expertise varied across shifts; 5) a mix of eight and twelve hour shifts made it to make patient assignments so as to meet patient and staff needs and, as a first priority, to ensure the safety of the infant. frequent changes in management and education teams, required continual adjustment to new ideas and methods. rather than being constrained by all these potential barriers, a decision was made to focus on what could be changed. leadership within the unit was seen as one way to influence how things were done and to effect change in care practices such as: 1) quiet time for infants and families; 2) unit leaders serving as role models for visiting teams; 3) supporting parent-infant seeking the evidence for a system change in a surgical nicu kaye spence am, rn, rm, mn research organization consultations observationreflection parents • profile • diagnosis • surgery • teams • challenges • stressors • satisfaction • perinatal support infant and family education organizational culture practice environment • structure • infrastructure • ambience • resources • experiences • staff:patient ratio • skills • models of care • teams infant staff environment figure 1—reflection model for using evidence developmental observer • 2012 • 17 interactions enabled parents to be more competent in the care of their complex need infant; 4) a forum was established to offer the families more opportunities to share their experiences and stressors given the strong psycho-social support that was available in the unit; and 5) staff education and awareness was improved through creative ways of introducing staff to the nidcap model. evidence was gathered to support the change model through the research outputs of the unit. the main issues identified from the evidence were parental stress (from seeing their infant in pain), being separated from their infant, and feeling helpless while their infant was in the nicu.1 the infant’s behavior following newborn surgery was found to be nonoptimal and early intervention to improve mutual competence in mother-infant interactions is recommended.2 parent targeted interventions are also suggested to alleviate psychological distress in families3-4 as well as identifying specific challenges of feeding and maintaining growth.5 infants following newborn surgery are at high risk of developmental delay and multi-disciplinary follow-up is required.6-7 parent satisfaction is an important component of family-centered care. families asked for more consistency in nurse allocation, consistency in the information provided, consideration of ways of supporting and involving them more in their baby’s care, and supportive communication.8 parents of surgical infants identified that they require a high level of support from nurses to reduce their stress.9 understanding the culture of the work environment and what nurses find as interesting, exciting and frustrating, can help in implementing the philosophy of developmentally supportive care.10 the organizational culture has an effect on the nurses’ thinking and ways of working.11 encouraging nurses to reflect on the effect of their care requires an allocation of time in the busy workday for learning and reflection to take place.12 further evidence was obtained from the nidcap trainees, trainer and research involving nidcap implementation.13 consistent challenges to modify care practices, the environment, and how the team works with families were identified. the behavioral observations demonstrated a need for integration of specific interventions for surgical infants whose care needs often change on a daily basis and long-stay infants often with varied chronic needs. the challenge was to meet the differences within the constraints of the environment and staffing challenges. the nidcap nursery templates14 were administered and the resulting scores provided a baseline to monitor improvement in caregiving and areas to target education. this evidence was collated and a plan for change (figure 2) was developed and was based on the concurrent needs of the baby, the parents, the staff and the organization. this is described in detail using the four components of the model. infant infants who require newborn surgery for a variety of congenital abnormalities or acquired conditions present many challenges. their acuity can change on an hourly basis and several co-morbidities make care planning difficult. there is a lot of movement between hospital departments such as the operating theater, diagnostic imaging (mri) and isolation. multiple medical and specialist teams have their own priorities and preferences. the biggest challenge for the infants is establishing feeds which may take weeks to sustain growth. quiet time for three hours is a time for the parents to get to know their infant, lights are dimmed and procedures kept to a minimum. parents over 30% of the admissions to the unit are through antenatal referral and bookings following a perinatal diagnosis.15 a perinatal support program has been established that offers counseling and site tours of the nicu between 32-36 weeks to enable the families to meet key staff, the social worker and have an introduction to developmental care. in the nicu, parents write care plans with the nurses and use growth charts to plot their baby’s progress. kangaroo care is supported for both parents, and visiting by the extended families for support is encouraged. the nidcap observations and following discussion enables families to gain a greater understanding research organization consultations observationreflection parents • profile • diagnosis • surgery • teams • challenges • stressors • satisfaction • perinatal support infant and family education organizational culture practice environment • structure • infrastructure • ambience • resources • experiences • staff:patient ratio • skills • models of care • teams infant staff environment figure 2—plan for change 18 • 2012 • developmental observer of challenges their infant faces as they recover from surgery and establish enteral feeds. the various ethnicities and different languages spoken by the parents are a specific challenge and the nurses often use ‘google-translate’ on the bedside computers to communicate in arabic, mandarin or french. baby diaries are started when the infant is admitted and these provide a journal of the infant’s progress; entries are made by parents, nurses, siblings and others. these are a keepsake and enable the parents to be creative in their scrapbook skills. a parent support group is held weekly and a library is available with booklets to help explain the various complex conditions that the infants may have. staff providing opportunities to learn about developmentally supportive care is a priority for the staff with varying levels of experience. a multidisciplinary developmental care implementation team was started and meets once a month to review the progress of implementing the model of practice. case studies and bedside rounds with families are used to demonstrate the use of care-plans and recommended interventions. the orientation program for new staff includes an introduction to nidcap. a competency program on developmental care is used as well as educational worksheets. all nurses coming to work in the nicu are part of clinical supervision groups where reflection becomes part of their learning to adapt to change and new experiences. an information brochure for visiting medical specialist teams is being developed to assist with their understanding of infant behavior, including states and cues. environment the biggest challenge for change is the environment. a culture of chatting between staff and parents exists and sound as a stressor is often not appreciated. an environmental sound audit has been completed and staff are made aware of the infant’s responses to sound. the snicu uses open-care cots so the protective barrier of the incubator is not always available. the large number of personnel creates a high traffic area and nidcap trainees are constantly reminding staff to walk and talk softly. an orientation walk through the unit by a nidcap trainee has proved to be useful in raising the staff ’s awareness of their surroundings and to experience the nicu environment from the perspective of the infant and parent. using this information as model for system change was developed to give a focus for implementing change (see figure 3). table 1 below what is currently available to support the system change and the challenges as targets of change. next steps having used the available evidence to identify and support a system change, the next steps are to review progress regularly, implement changes as they arise and then evaluate the success. an important component of any change is to set criteria for evaluation so measurements can occur over time to enable success to be celebrated and improved. this is the next component of the plan. currently available challenges infant and family opportunities to build relationships maintaining the focus of care support strategies creating time to implement change developmental care plans language /communication of families nidcap observations electronic records a barrier for sharing information with families developmental resources education evidenced based practice using evidence in practice competency based introductory training programs certificate/diploma electronic resources higher degrees gen y approach to learning developmentally supportive care multiple teams nidcap readings organizational culture culture of learning15 large workforce people take responsibility and support one another part-time staff experiences are shared and individuals learn from mistakes as well as successes ritualistic practices good ideas are heard, acted upon and rewarded rotating staff a learning culture is developed from the top of the organization /unit. larger health facility undergoing organizational change practice environment developmental care model of practice workload and time pressure shared care ‘the way things are done here’ parents in partnership multiple specialist teams high acuity patients table 1 developmental observer • 2012 • 19 references 1. spence k, diffin j, badawi n, johnston l. parental stress when a neonate requires surgery. 2011. presented at the annual susan ryan neonatal seminar, october , sebel hotel, parramatta. 2. laing s, mcmahon c, ungerer j, taylor a, badawi n, spence k. “mother-child interaction and child developmental capacities in toddlers with major birth defects requiring newborn surgery.” early human development. 2010; 86: 793-800. 3. diffin j,spence k, badawi n, hunt r, anderson p, jordan b, harms l, shield, md, cruise sm, johnston l. predictors of psychological distress in mothers and fathers of neonates admitted to the neonatal intensive care unit for surgical correction of a congenital anomaly. 2012. abstract presented at faops/psanz. 4. psaila k, laing s. sustaining the developing relationship: the experience of mothering in the nicu. journal of paediatrics and child health. 2008; (44), supp 1; a105. 5. spence k, swinsburg d, griggs ja, johnston l. infant well-being following neonatal cardiac surgery. journal of clinical nursing. 2011; 20 (17-18): 2623-32. 6. laing s, walker k, ungerer j, badawi n, spence k. early development of children with major birth defects requiring newborn surgery. journal of paediatrics and child health. 2010; 47: 140-147 7. walker k, holland aj, winlaw d, sherwood m, badawi, n. neurodevelopmental outcomes and surgery in neonates. journal of paediatrics and child health. 2006; 42: 749-751. 8. laing s, spence k. parent satisfaction in the nicu. local report unpublished 2006. 9. lam j, spence k, halliday r. parents’ perception of nursing support in the neonatal intensive care unit (nicu). neonatal, paediatric and child health nursing. 2007; 10 (3): 19-25. 10. spence k, lau c. measuring culture as an empirical basis for implementing a model of practice in the nicu. journal of neonatal nursing. 2006; 12: 20-28. 11. greenwood j, sullivan j, spence k, macdonald m. nursing scripts and the organisational influences on critical thinking: a report of a study of neonatal nurses’ clinical reasoning. journal of advanced nursing. 31(5): 1106-1114. 12. hunter c, spence k, mckenna k, iedema r. learning how we learn: an ethnographic study of neonatal intensive care. journal of advanced nursing. 2008; 62, 6: 657-664. 13. laing s, spence k, mcmahon c, ungerer j, badawi n. challenges in conducting prospective research of developmentally directed care in surgical neonates: a case study. early human development. 2011 doi:10.1016/j. earlhumdev.2011.08.003 14. als h, buehler d, kerr d, feinberg e, & *linda gilkerson. profile of the nursery environment and of care components. template manual, part i. 2001; children’s hospital, boston and *erikson institute, chicago. nidcap federation international, 2001. 15. lakhoo k. (2011) fetal counselling for surgical conditions. early human development. 2011; doi:10.1016/j. earlhumdev.2011.11.004 16. maccoby m. the seventh rule: creating a learning culture. research technology management. 2003; 43 (3): 59-60. research organization consultations observationreflection parents • profile • diagnosis • surgery • teams • challenges • stressors • satisfaction • perinatal support infant and family education organizational culture practice environment • structure • infrastructure • ambience • resources • experiences • staff:patient ratio • skills • models of care • teams infant staff environment pictured above, from left to right: dorothy vittner, rn, msn, julie swanson, bsn, rn, heidelise als, phd, tammy casper, msn, med, rn, and monique oude reimer, rn. nfi display exhibit figure 3—model of focus for change the nidcap and nidcap nursery certification program (nncp) exhibit display w ith the generous support of the buehler family, the nidcap/nncp exhibit was unveiled at the contemporary forums/nfi conference, developmental interventions in neonatal care, in las vegas, nevada on november 13-16, 2011. the display, consisting of a free standing 10 foot lit background banner, 2 side banners, logo imprinted tablecloths, and nfi and nncp brochures and postcards, is the nfi’s latest effort at “getting the word out.” more recently the nidcap/nncp exhibit was displayed at the 25th annual gravens conference on the physical and developmental environment of the high risk infant, january 25-27, 2012, clearwater, florida, and at the ultra-early intervention conference and the nordic nidcap conference in stockholm, sweden, march 15-16, 2012. 20 • 2012 • developmental observer joke wielenga, rn, phd d e v e l o p m e n ta l r e s o u r c e s this column provides our readers with current information regarding developmental resources related to nidcap. articles 1. browne j, ross e. eating as a neurodevelopmental process for high risk newborns. clinics in perinatology. 2011; 38(4): 731-743. 2. keller m, mader s, saugstad od, thiele n, van steenbrugge gj. (eds) caring for tomorrow. efcni white paper on maternal and newborn health and aftercare services. 2011. download on http://www.efcni.org. 3. legendre v, burtner pa, martinez kl, crowe tk. the evolving practice of developmental care in the neonatal unit: a systematic review. physical & occupational therapy in pediatrics. 2011; 31(3): 315–338. 4. mcgrath jm, samra ha, kenner c. family-centered developmental care practices and research: what will the next century bring? journal of perinatal & neonatal nursing. 2011; 25(2): 165-170. 5. philbin mk, & ross e. the soffi reference guides: text, algorithms, and appendices: a manualized method for quality bottle feedings. journal of perinatal and neonatal nursing. 2011; 25(4): 360-380. 6. ross es, philbin mk. soffi: supporting oral feeding in fragile infants: an evidence-based method for quality bottle-feedings with preterm, ill, and fragile infants. journal of perinatal and neonatal nursing. 2011; 25(4): 349-357. special journal issues 1. special issue of newborn and infant nursing reviews 2011; 11(3) on neuroprotective strategies. edited by mcgrath jm: a. altimier l. mother and child integrative developmental care model: a simple approach to a complex population. newborn and infant nursing reviews. 2011; 11(3): 105-108. b. mcgrath jm, cone s, samra ha. neuroprotection in the preterm infant: further understanding of the short-and long-term implications for brain development. newborn and infant nursing reviews. 2011; 11(3): 105-108. 2. special issue of clinics in perinatology, 2011; 38(4) on foundations of developmental care. edited by browne jv and white rd: a. browne jv. developmental care for high-risk newborns: emerging science, clinical application, and continuity from newborn intensive care unit to community. clinics in perinatology. 2011; 38(4): 719-729. b. white rd. designing environments for developmental care. clinics in perinatology. 2011; 38(4): 745-749. 3. special issue of current women’s health reviews, 2011;7(3) on kangaroo mother care: a. charpak n, gabriel ruiz j. kmc, concepts, definitions and praxis: what elements are applicable in what settings in which local circumstances? current women’s health reviews. 2011; 7(3): 232-242. b. ludington-hoe m. evidence-based review of physiologic effects of kangaroo care. current women’s health reviews. 2011; 7(3): 243-253. c. tessier r, cristo m, nadeau l, schneider c. prematurity and morbidity: could kmc reverse the process? current women’s health reviews. 2011; 7(3): 254-261. d. r. pallas-alonso r, lópez-maestro m. human milk and kangaroo mother care. current women’s health reviews. 2011; 7(3): 262-269. e. de leon-mendoza s, mokhachane m. “early“ or timely discharge in kangaroo mother care: evidence and experience. current women’s health reviews, 2011; 7(3): 270-277. f. hedberg nyqvist k, heinemann ab. kangaroo mother care: optimal support of preterm infants‘ transition to extra-uterine life in the high tech nicu environment. current women’s health reviews. 2011; 7(3): 278-287. g. als h, mcanulty g. the newborn individualized developmental care and assessment program (nidcap) with kangaroo mother care (kmc): comprehensive care for preterm infants. current women’s health reviews. 2011; 7(3): 288-301. h. sloan n, ahmed s, islam m, mitra s. experiences with community kangaroo mother care in very lowincome settings. current women’s health reviews. 2011; 7(3): 310-316. book and book reviews berryman, r. book review: developmental care of newborns and infants: a guide for health professionals (2nd edition). advances in neonatal care, 2011; 11 (3): 223. conferences the 7th international conference on brain monitoring and neuroprotection in the newborn. united states, tampa (fl), september 13 – 15, 2012. www.cme.hsc. usf.edu marjorie palmer’s feeding conference. united states, new york, october 23-27, 2012. developmental observer • 2012 • 21 developmental interventions in neonatal care. united states, orlando (fl), november 7–10, 2012. http://www. contemporaryforums.com/ 3rd international congress of uenps november 14 17 / 2012, porto, portugal. there will be a pre-congress course on “ family centred developmentally supportive care”. (14 november) speakers : bjorn westrup, silka mader, matthias keller, nikk conneman and rodd hedlund. international network on kangaroo mother care. conference on kangaroo mother care. india, ahmedabad, gujarat, november 22-25, 2012. http://www. ipaworld.org/brochure%208-12%20 for%20website.pdf ipokrates foundation clinical seminar/ comprehensive brain care for newborn infants including fostering development (nidcap, parent-infant relationships). torino, italy centro congressi torino incontra, via nino costa 8, torino, italy. november 26 28, 2012. http://www.mcon-mannheim.de/ipokrates/ download/program_torino_2012.pdf the 26th annual gravens conference on the physical and developmental environment of the high risk infant, in collaboration with the march of dimes. united states, clearwater beach, (fl), february 27–march 2, 2013. www.cme. hsc.usf.edu websites of interest http://www.ene-mene-mini.eu http://www.babybloom.nl/ http://www.nurturedbydesign.com/ nidcap_nurse http://www.youtube.com watch?v= 9vkx2kuntla video and movie (fragments) in english how do neonatal therapists help with developmental care in nicu? http://www.youtube.com watch?v= 4wzbwx1n13q as of this edition, we will have completed the publication of five volumes, and ten issues of the developmental observer, the official newsletter of the nfi (vol.1, no. 1; first published in 2007). over the course of these past five years we have drawn upon the valued expertise and experience of professionals who have generously given of their time and energy to contribute articles to this growing publication. we wish to thank the following individuals for their assistance in the provision of an educational newsletter that supports the nidcap approach to care and is greatly appreciated by the nfi membership and the readership of the developmental observer. these individuals and the columns that they contributed to, include: 1. diane ballweg, msn, rnc, ccns: developmental resources 2. tracy price-johnson, ma: family voices 3. kaye spence, am, rn, rm, mn: nidcap profile 4. dorothy vittner, rn, msn: nidcap profile 5. inga warren, dip cot, ms: current developmental research 6. victoria youcha, edd: family voices thank you all for your time, energy, commitment, expertise, and support. you all have been of great help in producing this high quality newsletter. we would also like to take this opportunity to welcome our new contributors to the developmental observer. we look forward to closely working with them in the development of articles and know that they will continue to produce the high quality, reflective and insightful vision of this newsletter in years to come. these individuals and the columns that they will contribute to include: 1. maría lópez-maestro, md, phd: nidcap profile 2. jacqueline mcgrath, rn, phd: current developmental research 3. debra paul, otr: family voices 4. joke wielenga, rn, phd: developmental resources welcome to the developmental observer family! and finally, we wish to thank melissa r johnson, phd for her continued time, energy, thoughtfulness and expertise in the contributions she has made to the supporting families column. we very much look forward to your future columns and we greatly appreciate your insightful contributions. thank you, melissa! developmentally yours, developmental observer contributor transitions rodd hedlund, med senior editor, developmental observer deborah buehler, phd sandra kosta, ba gretchen lawhon, rn, phd associate editors, developmental observer 22 • 2012 • developmental observer m e s s a g e f r o m t h e n f i p r e s i d e n t continued from page 2 n i d c a p p r o f i l e continued from page 5 f e e d i n g t h e m o s t f r a g i l e continued from page 12 and the care that they provide. these approaches have generated a feeling of pride of belonging to the unit. the unit has made it possible for 12 de octubre hospital to be the first major hospital in spain to achieve the award from unicef, “the baby friendly hospital initiative (bfhi),” or the “baby friendly initiative” (bfi),” a global world health organization and unicef program following the adoption of the innocenti declaration on breastfeeding promotion. the initiative is a global effort to improve the role of maternity services to enable mothers to breastfeed babies for the best start in life. it aims to improve the care of pregnant women, mothers and infants at health facilities that provide maternity services for protecting, promoting, and supporting breastfeeding, in accordance with the international code of marketing of breast-milk substitutes. using the knowledge from the nidcap approach to care, dr. pallás identified a productive path for the unit’s improvement and growth and the principles that provide inspiration for its activity. the nidcap approach has turned into a priority aim for the training of professionals who, in collaboration with the remainder of the team, can contribute to improving the daily care of infants and their families. a team of young doctors and nurses from the 12 de octubre neonatology unit was designated to be trained as nidcap professionals. in 2005, the team met with dr. graciela basso, whose help has gradually laid the foundations of another way to think, see and care of infants and their families. the first nidcap professionals started to work in the unit in 2007. once this initial challenge was attained, the work and search for resources carried on, which enabled the unit to continue to grow. together with dr. basso and the invaluable help of dr. als, we now have an apib professional and nidcap trainer in the unit. today, we are proud to say that the 12 de octubre neonatology unit is a nidcap training center, led by dr. pallás. her presence benefits the children and families seen in the 12 de octubre hospital, in both madrid and the rest of spain. dr. pallás is currently supervising and developing an important challenge for health in madrid: the implementation of a project that trains in developmentally-centered care in 20 newborn intensive care units in madrid’s public hospitals. the developmentally-centered care courses are being financed, by means of subsidies to improve normal birth care, from the ministry of health, consumer affairs and social policy and approved by the autonomous community of madrid. the death of her sister pilar two years ago, to whom dr. pallás dedicated daily care and attention during a long illness, has only served to strengthen her desire to transform health services for better patient care. everybody in the unit is convinced that we need to care for patients and their families as we ourselves would like to be looked after. everyone fortunate enough to work with dr. pallás is convinced that we are building the foundation to increase the quality of neonatology departments and ensure that the infant, family, and their needs are the center of our entire occupation and concern. references 1. berendt je. the jazz book: from ragtime to fusion and beyond. 1981. lawrence hill books. 2. jackson t. jazz and musical practice. in d. horn & m. cooke (eds.), the cambridge companion to jazz. 2002. cambridge: cambridge university press. 3. meisner s, & longwell d. sanford meisner on acting. 1987. new york: random house. 4. smith k, buehler d, & als h. nidcap nursery certification criterion scales. 2009. (unpublished manuscript). boston: copyright, nidcap federation international. references: 1. eichenwald ec, blackwell m, lloyd js, tran t, wilker re, richardson dk. inter-neonatal intensive care unit variation in discharge timing: influence of apnea and feeding management. pediatrics. 2001; 108: 928-33. 2. ross es, philbin mk. supporting oral feeding in fragile infants. an evidence-based method for quality bottle-feedings of preterm, iii, and fragile infants. journal of perinatal neonatal nursing. 2011; 25 (4): 349-357. 3. philbin mk, ross es. the soffi reference guide: text, algorithms, and appendices. journal of perinatal neonatal nursing. 2011; 25, (4): 360-380. 4. browne j, ross e. eating as a neurodevelopmental process for high risk newborns. clinics in perinatology 2011; 38: 731-43. 2. fucile s, gisel eg, lau c. effect of an oral stimulation program on sucking skill maturation of preterm infants. developmental medicine and child neurology. 2005; 47: 158-62. 5. fucile s, gisel eg, lau c. effect of an oral stimulation program on sucking skill maturation of preterm infants. developmental medicine and child neurology. 2005; 47: 158-62. 6. fucile s, gisel e, lau c. oral stimulation accelerates the transition from tube to oral feeding in preterm infants. journal of pediatrics. 2002; 141: 230-6. 7. rocha ad, moreira me, pimenta hp, ramos jr, lucena sl. a randomized study of the efficacy of sensory-motor-oral stimulation and non-nutritive sucking in very low birthweight infant. early human development. 2007; 83: 385-8. 8. bragelien r, rokke w, markestad t. stimulation of sucking and swallowing to promote oral feeding in premature infants. acta paediatrica. 2007; 96: 1430-32. 9. boiron m, da nobrega l, roux s, henrot a, saliba e. effects of oral stimulation and oral support on non-nutritive sucking and feeding performance in preterm infants. developmental medicine and child neurology. 2007; 49: 439-44. 10. lessen b. effect of the piomi on feeding and length of stay. advances in neonatal care. 2011; 11: 129-39. 11. poore m, zimmerman e, barlow sm, wang j, gu f. patterned orocutaneous therapy improves sucking and oral feeding in preterm infants. acta paediatrica. 2008; 97: 920-27. 12. hawdon jm, beauregard n, slattery j, kennedy g. identification of neonates at risk of developing feeding problems in infancy. developmental medicine and child neurology. 2000; 42: 235-9. 13. cerro n, zeunert s, simmer kn, daniels la. eating behaviour of children 1.5-3.5 years born preterm: parents’ perceptions. journal of paediatric child health. 2002; 38: 72-8. 14. samara m, johnson s, lamberts k, marlow n, wolke d. eating problems at age 6 years in a whole population sample of extremely preterm children. developmental medicine and child neurology. 2010; 52: e16-e22. 15. edelman gm. neural darwinism. the theory of neuronal group selection. new york: basic books, inc.; 1987. 16. als h. toward a synactive theory of development: promise for the assessment and support of infant individuality. infant mental health journal. 1982; 3: 229-43. 17. jadcherla sr, wang m, vijayapal as, leuthner sr. impact of prematurity and co-morbidities on feeding milestones in neonates: a retrospective study. journal of perinatology. 2010; 30:201-08. 18. prasse je, kikano ge. an overview of pediatric dysphagia. clinical pediatrics (phila). 2009; 48: 247-51. developmental observer • 2012 • 23 developmental observer nidcap federation international board of directors and staff the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu assistant secretary/treasurer sandra kosta, ba national nidcap training center email: sandra.kosta@childrens.harvard.edu jeffrey alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org silke mader founder, european foundation for the care of newborn infants email: silke.mader@efcni.org jacques sizun, md director, french nidcap center email: jacques.sizun@chu-brest.fr kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu inga warren, dip cot, msc nidcap trainer director, uk nidcap training centre at st. mary’s email: inga.warren@imperial.nhs.uk victoria youcha, edd child development specialist children’s medical associates email: vyoucha@gmail.com rodd hedlund, med director nidcap nursery certification program nidcap trainer mid-atlantic nidcap center email: nncpdirector@nidcap.org www.nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital camden, new jersey, usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se connecticut children’s nidcap training center connecticut children’s hartford, connecticut, usa co-director: ann milanese, md co-director and contact: dorothy vittner, rn, msn email: dvittner@ccmckids.org french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contacts: tammy casper msn, med, rn or linda lacina, rn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be ålesund hospital nidcap center ålesund hospital ålesund, norway co-director: livellen helseth, rn co-director and contact: unni tomren, rn email: unnitomren@gmail.com the barcelona-vall d’hebron nidcap training center spain, established 2011 hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, med contact: windy crow email: stjosephnidcap@dignityhealth.org become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org/membership.aspx, or email us at nfimembership@nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment 14 • 2022 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 chabba r, tyebkhan j edmonton nidcap training centre canada (entcc) citation: eckleberry-hunt j, lick d, hunt r. is medical education ready for generation z. j grad med educ. 2018;10(4):378-381 the article begins by pointing out how medical education should plan to make adaptations based on how different generation z is from other generations. generation z are those born between 1995 and 2012. they are the only generation that has always had access to the internet and social networking, and hence have a hard time disengaging from technology. they are hardworking and independent in their learning but also prefer close mentoring relationships. having always had access to technology and the internet, they want to know what they need to know in the moment and prefer not to spend long hours listening to lectures. rather than the traditional approach to medical education, these students will both need and expect a customized experience. generation z is known to have a shorter attention span compared to other generations, and expect material presented to them to be engaging. since retrieving information has always been so easy for this generation, they lack the skills to be able to evaluate information and will need help to do so. the authors suggest education of generation z should include modern technology, and creative modalities such as podcasts and simulations. this generation also expects quick and personal feedback. active learning methods including reflection and discussion will be more useful with this generation versus traditional lectures. the authors conclude by reminding us that the goal should always be to ensure quality patient care as we consider making these changes, although historically, medical education has been hesitant to make reforms. relevance for nidcap • the youngest parents and new staff coming into the nicu are generation z and will want to receive information as described by this article. • the nidcap model involves observation and sharing that observation in a detailed narrative report to both staff and patients. based on the findings of this article, both staff and patients may not engage with this material thus suggesting there is an immediate need for change. • the new generation of nidcap trainees are likely to prefer more creative ways of sharing their observations. we suggest that these creative ways are embraced by the nfi. thergaonkar n. aaroha centre for psychological services, mumbai, india citation: montirosso r, rosa e, giorda r early intervention study group, et al early parenting intervention – biobehavioral outcomes in infants with neurodevelopmental disabilities (epi-bond): study protocol for an italian multicentre randomised controlled trial bmj open 2020;10:e035249. doi: 10.1136/bmjopen-2019-035249 overview infants with neurodevelopmental disability are at risk for altered behavioral and socioemotional patterns. the present longitudinal, multi-center interventional clinical trial aims at assessing the effectiveness of an early parenting intervention based on video-feedback technique (vfi) to support maternal responsiveness (parental sensitivity) and the socio-emotional development of infants with developmental disabilities using a multi-layer approach to outcomes assessment (behavioral, neuroendocrine and epigenetic outcomes). the study plans an estimated enrollment of 180 participants, randomized into parallel assignment intervention model with double masking participant, outcome assessors. the study start date was september 2019 and estimated completion date was december 2021. study design inclusion criteria • infants: age range 3-18 months with mildmoderate psychomotor delay journal club presentation: early parenting intervention – biobehavioral outcomes in infants with neurodevelopmental disabilities (epi-bond): study protocol for an italian multicenter randomized controlled trial journal club presentation: is medical education ready for generation z? doi: 10.14434/do.v15i1.33782 doi: 10.14434/do.v15i1.33783 2022 • developmental observer • 15 n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 • mothers: age > 18 years, living with the father of the infant and mastery of italian language exclusion criteria • infants: presence of severe sensory deficits and genetic syndrome with known functional implications for epigenetic regulation of target genes • mothers: documented mental disorder and documented disability methodology • the intervention group will include dyads of mothers and their infant with developmental disability who are exposed to the vfi focused on different domains of mother-infant quality of interaction (number of sessions: 6) • the control group will have dyads of mothers and their infant with developmental disability who will receive phone calls focused on obtaining descriptions of different domains of infant behavioural development instead of the vfi, (number of sessions: 6). primary outcome measure: • the study will have four assessment sessions: t0baseline, t1post intervention, t2short-term follow-up (3 months) and t3long-term follow-up (6 months). • improvement of infants’ behavioural and socio-emotional regulation will be measured by grs coding system, based on infant behavioural regulation as well as face-to-face still face (ffsf) double exposure paradigm from a 10 minute unstructured motherinfant interaction with standard set of toys. • developmentally supportive parental behaviour (maternal sensitivity) will be assessed by the piccolo coding system as well as face-to-face still face (ffsf) double exposure paradigm from a 10 minute unstructured mother-infant interaction with astandard set of toys. • salivary samples of mother and infant for cortisol and oxytocin will be collected at each assessment session (additional samples for infants will be taken at 15 (reactivity) and 30 (recovery) minutes after the ffsf procedure. • change in hormones and capital salivary oxytocin concentrations will be assessed for differences between and within group by generalized linear model. • the hypothalamic-pituitary -adrenal (hpa) axis stress regulation will be assessed in terms of direction and magnitude. • dna methylation of target genes will be assessed at specific cpg sites by separate saliva samples of infants for epigenetic analysis at the end of the ffsf procedure. feasibility outcome measures • feasibility of the interventions will be assessed by ‘acceptance of the intervention’ and ‘maternal experience’ with vfi rating scales from mothers, at t1. relevance for nidcap • brings new evidence to promote early intervention for mothers of infants with developmental disabilities. • provides a common early intervention program to optimize healthcare costs. • introduces an innovative approach to early parenting intervention for families of infants with developmental disabilities by studying the epigenetic variations. westrup b. co-director karolinska nidcap training & research center. dept of neonatology; astrid lindgren’s children’s hospital karolinska university hospital dept women’s & children’s health, karolinska institute citation: world health organization, united nations children’s fund, world bank group. nurturing care for every newborn (in progress). geneva: world health organization; 2021. summary the first hours, days and weeks after birth are a precious time for a newborn’s survival, health and development. knowledge and tools are available to provide every newborn with nurturing care that involves parents and other caregivers directly. to create the enabling environment for providing such care, there is a need to invest in policies, health systems and community awareness. as more newborns survive, we now need to make sure that they also thrive. this is especially important for those at greatest risk: small and sick babies who are more likely to die or suffer more illness. this thematic brief summarizes why nurturing care is essential for every newborn. nurturing care comprises five interrelated and indivisible components: good health, adequate nutrition, safety and security, responsive journal club presentation: thematic brief: nurturing care for every newborn doi: 10.14434/do.v15i1.33784 developmental observer • 2020 • 25 julia giesen, nidcap professional-in-training, edmonton, canada p o e t ' s c o r n e r today you showed me something new could it possibly be true? that when you were born you started out whole all systems working as is our goal to have you move between your states with smooth transitions and no mistakes no interruptions to get you there and nothing breaking the moment where you grow and heal and find good rest where your little brain can do its best and here we stand at a fork in the road an opportunity to lay down the code for how you will do in the years ahead will we be with you or will you lay in your bed cycling through trying to breathe on your own your little struggles not being known will you continue to be so strong? or will we pick the road that is long? on our watch “on our watch” doi: 10.14434/do.v13i2.31222 hello from the edmonton nidcap training centre canada, entcc for short! i am julia giesen and i had the pleasure to meet many of you in the world-spanning nidcap community at the nidcap trainers meeting in our fair city in 2017. that meeting inspired me to pursue nidcap training which i started the following spring under the direction of our trainer juzer tyebkhan. initially i found the observations overwhelming. each observation opened my eyes to something i had never seen before, much of it hard to stomach. could our little patients really be having such a difficult time, so often, without us being aware? what must that feel like? and what does that do to them over time? i struggled to get down in words what i was seeing, to describe it accurately and in a way that families would easily understand. i spent hours picking out the words for my reports and the days were long. at the end of the day after hours at the keyboard the last thing i wanted to do was to fill out another form for the journal page. i couldn’t think straight anymore and it felt too raw to reflect on it right away. i took the evening to let things settle in, poured myself a cup of tea, grabbed pen and paper, and wrote. i tried a number of reflection styles but what resonated most for me was to write freely and what ensued were a series of poems. i am sharing some of my poems with you, hoping they help you see what i saw on this great nidcap journey. this first poem is from an observation in january 2019 on a little boy named alex. alex was born at 25 weeks and was six days old. he showed me that the protective effect of the womb may indeed last for several days after birth before beginning to fade as we encounter life on our own. 4 • 2019 • developmental observer online video-based supplement for assessment of preterm infant behavior (apib) and newborn individualized developmental care and assessment program (nidcap) education dyck na,b,c, tyebkhan jma,b,c, nykipilo aa,c a stollery children’s hospital b university of alberta c edmonton nidcap training centre canada (entcc), edmonton, alberta, canada aims in response to repeated requests for enhanced educational materials for nidcap and apib training, nidcap federation international (nfi) members were asked in october 2016 to share photos and videos for the creation of a photographic library. video offers several advantages over verbal or written communication and education, and has been shown to improve technical and non-technical neonatal resuscitation skills.1 the presentation of large amounts of information in a limited amount of space and time, simplifying complex/abstract concepts, demonstrating how concepts/subjects in motion relate to one another, engaging audience attention and retention of information are enhanced2; all these are educational goals of nidcap training. our experience of video-supplemented nidcap education concurs with these findings. thus, we have created an online video-based tool to supplement apib and nidcap education. our goals were to a) create this tool, b) present this work at the 2018 nidcap trainers meeting (ntm) for feedback from the nfi membership, and c) invite collaboration from the membership to expand this preliminary work. methods parents and staff providing care to nicu infants (n=21), at the stollery children’s hospitals, gave written consent for videotaping of caregiving interventions. a variety of caregiving procedures, (clinical examinations including the apib, diaper changes, needle sticks, procedures, etc.) were captured on video. videos reviewed by jmt and an were categorized according to synactive subsystems, (for the nidcap section)3 and systems, packages or summary scales (for the apib section).4 many video clips raised questions related to nidcap observations and/or apib examinations and scoring and were placed in a separate section, ‘platform for debate’. videos in the platform for debate section were linked to feedback forms to facilitate e-mail communication with the edmonton nidcap training center canada (entcc), so that nfi members can offer their perspectives and insights. all videos were uploaded to a password protected database and website. results/findings video captured more detail than transcription onto nidcap observation sheets. similarly, video of apib exams led to more detailed scoring, than the scoring based on examiner’s memory. the videos often provided a different view of the infant, comimage of the nascent homepage. pared to that of the observer, thus affording a more complete record of the infant’s behavioral patterns. the videos will be shown during our presentation at the trainers meeting. we invite discussion at the ntm regarding members’ feedback about the user-friendliness and utility of this resource and the possibilities of forming a working group to expand this work. conclusion and further plans we will continue to record and upload videos, and welcome others to submit videos for inclusion in this online learning resource. we anticipate this resource will be used by nidcap and apib trainers and trainees as a supplement to the nfi training manuals. we hope the “platform for debate” section will serve as a forum for collaborative discussion about the complexities of neurobehavioral observation and scoring. electronic resources support trainers and trainees to review and discuss the complexities of behavioral responses and apib scoring online which may shorten the time required for training. such resources also allow review of behavioral response patterns and corresponding apib scores not observed during formal training days. we hope the online communication channel of this resource will enhance the skills of all who strive to provide nidcap-based, individualized neurobehavioral care for infants in their nurseries. addendum: in discussion with senior author juzer tyebkhan, the nascent program has been recognized as a new teaching tool under the auspices of the nfi’s program committee. nascent is a promising new tool to support apib and nidcap training. developmental observer • 2019 • 5 references 1. skåre c, calisch te, sæter e, rajka t, boldingh am, nakstad b, niles de, kramer-johansen j, olasveengen tm. implementation and effectiveness of a video-based debriefing programme for neonatal resuscitation. acta anaesthesiologica scandinavica. 2018; 62:394-403. https://doi. org/10.1111/aas.13050. 2. hurtubise l, martin b, gilliland a, mahan j. to play or not to play: leveraging video in medical education. journal of graduate medical education. 2013; 5(1):13–18. http://doi. org/10.4300/jgme-05-01-32. 3. als, h. manual for the naturalistic observation of newborn behavior. nidcap federation international. 2006. retrieved from http://nidcap.org. 4. als h, lester b, tronick e, brazelton b. manual for the assessment of preterm infants’ behavior (apib). nidcap federation international. 2006. retrieved from http://nidcap.org. 30 • 2022 • developmental observer ireland is an island country in north-western europe, comprising the republic of ireland, and northern ireland which is part of the united kingdom. the population of the republic of ireland is approximately five million. the publically funded healthcare system in ireland provides healthcare and personal social services. the hospital structure is organised into seven groups, four of whom have tertiary centres. the nineteen neonatal units are classified according to their number of births into local, regional and tertiary neonatal units. there are 11 local units, four regional units and four tertiary units. there are 300 neonatal cots in total: 193 special care, 52 high dependency care and 55 intensive care. three of the four tertiary level 3 neonatal units are situated in dublin city and one in cork city: cork university maternity hospital. a new model of care for neonatal services in ireland was launched in 2015. the recommendations set out in this model were benchmarked against international standards and have been informed by neonatologists, paediatricians, neonatal nurses and health and social care professionals (hscps) involved in providing care to newborn babies. there was also consultation with the key stakeholders: parents whose babies had received care in a neonatal unit, through our partners the irish neonatal health alliance and the irish premature babies association. the views of all groups were considered in the development of the new model, with the overall aim of designing systems that will provide quality evidence-based care to every baby. the report stated that, “it is a goal in nicus to provide family-centred care, aided by programmes such as the newborn individualized developmental care and assessment programme (nidcap) which aims to provide individual holistic care to infants in an environment that can be potentially toxic to the developing brain”. currently, limited numbers of nurses have been nidcap trained. a cns role specialising in family-centred care and nidcap will be established, initially in the tertiary units with future expansion to other units. developmental care is the name that encapsulates nidcap, fine and ficare in ireland. some units are adapting aspects of ficare while others are working with the fine programme. cork university maternity hospital (cumh) was opened in 2007, formed by the amalgamation of services of three maternity hospitals in cork city. cumh is one of the busiest units in the country with 7,500 births yearly with 1 in 10 babies admitted to the neonatal unit (nnu). cumh, forms part of the health service executive south/south west hospital groups, the neonatal unit at cumh is a referral centre for extreme preterm and ill babies from counties kerry, tipperary, waterford and limerick maternity units. the nnu in cumh is a 50 bed unit, made up of 18 intensive care beds and 32 special care/immediate care beds. newborns from 23 weeks gestation to term are looked after in the unit, from admission to discharge. it is also the regional centre for newborns needing therapeutic cooling. global perspective on developmental care ireland susan vaughan1 and mary o’connor2 1 cork university maternity hospital,2 coombe women & infants’ university hospital, dublin. 2022 • developmental observer • 31 developmental care was first introduced into cork by inga warren with lectures to staff in 1990 but it wasn’t until 2007 that professor anthony ryan (neonatologist) and lucille bradfield (neonatal nurse manager) secured funding for formal nidcap training to begin. in 2009, two neonatal nurse/midwives, susan vaughan and ann flynn were certified under the guidance and training of dr. nikk conneman and monique oude reimer. in 2011/2012 three more nurses, ann buckley, kathleen o’ riordan and mary cullinane and annmarie cronin, nnu physiotherapist, became nidcap professionals. in cumh, a multidisciplinary group was set up including past parents of the unit, social work, ot, slt, medical and nursing staff and the nidcap professionals to develop a more family-centered unit and to promote developmental care. we are striving as a unit to become not just family centred but family integrated. some of our recommendations and changes to the unit are: welcome booklets for parents, in-service study days for all staff members in the unit, ownership to the promotion of developmental supportive environment and care to all staff, a read-a-thon to encourage parents to read and speak to their babies now and in the future. we developed kangaroo/skin to skin care protocols, guidelines and education days and were very proud that kc was such a normal and highly valued part of our care of newborns that it was not stopped or time limited to mothers during the recent pandemic. the nidcap group in cumh is responsible for the education sessions in developmental care in the higher diploma neonatology nursing at university college cork (ucc), new medical doctors to the nnu, and student nurses and midwives within cumh. we have celebrated world prematurity day on november 17th for the last 10 years, combined with a coffee morning for all past patients and their parents. we are very lucky to have the presence and support of mandy daly and the neonatal health alliance at the coffee morning and throughout the year. cumh is also a research hospital and is linked to infant, irish centre for maternal and child health research. the nidcap team are currently involved in research projects within the unit. there are plans to develop nurse specialists roles in developmental care within the unit. the coombe hospital in dublin was founded in 1826 due to extensive maternal and infant mortality in the environs and relocated in 1967 to the current site. the hospital, one of the three stand-alone maternity hospitals in the irish setting has undergone several revisions of title and is presently known as the coombe women & infants’ university hospital (cwiuh). after much discussion on location, it will be the maternity hospital that will be co-located with st james’s hospital and the national children’s hospital which is currently under construction. we work closely with our level one partner within the dublin midlands hospital group. our neonatal centre has a forty-cot capacity, 14 intensive care, 10 high dependency care and 16 special care cots. we are one of the three dublin hospitals that facilitate the national neonatal transport programme on a three-week rotation. we are also the national cardiac referral centre including referrals from northern ireland for delivery and stabilisation before transferring to the children’s heart centre. at local level we have introduced several family centred developmental care initiatives, which include increasing parental presence, encouraging their presence on ward rounds, and increased participation in their baby’s care. there is very positive feedback from the read-a-thon. we have reinvigorated our parents support group, ‘parents’ time out ‘(pto), facilitated by an interdisciplinary team including psychologist, neonatal nursing, and allied health professionals again with positive feedback. covid-19 really interfered with our philosophy as infection control measures took precedent during the pandemic, yet we collaborated with parents and while we restricted both parents being present together, we did not restrict/limit their time with their baby. we introduced face-time for baby and families which was a great success. continued professional development is central to our ethos in cwiuh and we facilitate family centred developmental education sessions for the foundation levels i and ii in neonatal nursing which is affiliated to trinity collage dublin, postgraduate diploma in neonatal intensive care nursing which is affiliated with the royal college of surgeons (ireland) and both foundation and postgraduate diploma level in paediatric intensive care nursing affiliated to university college dublin. cwiuh is the irish fine hub and we work closely with inga warren, who facilitated nidcap training in our unit. presently we have one nidcap professional, however formal nidcap observations and write-ups are not performed at the moment. this will change once we appoint the clinical nurse specialist in family centred developmental care. our second nidcap professional immigrated to the middle east. our close association with inga warren continues in facilitating all fine programmes and we have collaborated with the team from cumh for fine level i. we have coordinated fine level i on an annual basis since 2014, serving neonatal, paediatric nurses and allied health professionals and have worked with inga in facilitating fine level i online, our first in the autumn. since 2018 fine level i became mandatory for all nursing staff in our unit, health care assistants and our allied health colleagues also participate. five neonatal nurses and a physiotherapist have completed fine level ii. it is clear that there is still considerable development needed in family centred developmental care in ireland, a challenge that we are rising to meet. doi: 10.14434/do.v15i1.33786 the nidcap federation international has reached 20 years and we all look forward to the celebrations at this year's nidcap trainers meeting. in this issue we highlight the work of the various committees within the nfi. i encourage you, the members to get involved as your organization is only as strong as the membership’s contributions. in this issue eleni gerassis shows us how the impact of having a sick baby proved to be a catalyst for her amazing ongoing support for the current families as she celebrates her daughter’s 13 years. we can learn so much from the families and how they cope with the trauma of an early birth. we are challenged to improve our practice. inge van herreweghe and delphine druart in belgium share their efforts to improve feeding practices for small babies. from her science desk, ita litmanovitz challenges us about technology and its impact on the babies and families. the profile of the children’s hospital university of illinois (chui) training center takes you through a nidcap report to give an update on their amazing work. we travel to south africa to hear about one woman’s extraordinary work to ensure developmental care has an impact – congratulations welma lubbe. the facebook pages of many of the training centers highlight nidcap. if your center has a facebook page please let me know so i can profile your work. the number of publications relevant to nidcap is increasing – a small sample is included in this issue. enjoy the issue and please let me know what you liked and what you would like to see more of in future issues. kaye spence am senior editor – developmental observer adjunct associate professor/ clinical nurse consultant, australasian nidcap training centre/ sydney children’s hospitals network / western sydney university/australia 2021 vol. 14 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “the best time to plant a tree was 20 years ago. the second-best time is now.” chinese proverb table of contents editorial ...................................................... 1 the nfi celebrates 20 years ..................... 2 evolution of national guidelines ............ 4 family voices ............................................ 8 global perspectives ............................... 10 nidcap training centers around the world ........................................................ 14 the science desk .................................. 18 publications ............................................ 21 nidcap on the web ................................ 27 issn: 2689-2650 (online) do 14:2 full issue doi: 110.14434/do.v14i2.32997 nidcap care in the moment used with permission calming supportive hands greetings from the editor nfi celebrating 20years! read about our history and becoming a member on p.2. 2 • 2021 • developmental observer twenty years ago, the nidcap federation international (nfi) was founded. in the years leading up to 2001, nidcap outreach had grown to 12 nidcap training centers (11 in the us and 1 in europe). it became clear that nidcap efforts would be best served by organizing and forming a community of nidcap trainers and supporters. so, in october 2001, the nfi was incorporated as a membership and educational certifying non-profit organization (501c3). twenty years later, in 2021, our international community has grown to include over 3,000 clinicians, educators, researchers, families and students. the nfi continues to evolve, and to oversee, develop and support the nidcap model, caregiving and training approach. the nfi’s efforts, overseen by the board of directors, are distributed across four major committees: program, governance, advancement and finance, and three advisory councils. graphic depictions of the nfi's committees, councils, subcommittees and their respective activities can be seen here and on the next page. a semi-annual publication of the nidcap federation international ©2021. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria lopez maestro, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l family voices contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer the nfi celebrates 20 years! deborah buehler, phd, sandra kosta, ba doi: 10.14434/do.v14i2.32998 developmentalobserver@nidcap.org developmental observer • 2021 • 3 members are welcome and encouraged to participate in the nfi’s mission to advance the philosophy and science of nidcap care and assure the quality of nidcap education, training, mentoring and certification for professionals and hospital systems. whether you wish to volunteer time to write a blog or be interviewed for a podcast or join a committee or taskforce… there is a place for you to contribute. please direct your questions and interest to info@nidcap.org. we look forward to continuing to realize the nfi’s potential together over the next 20 years! info@nidcap.org 4 • 2021 • developmental observer background in 1998, under the leadership of professor dominique haumont, the first nidcap training started at saint-pierre university hospital. thanks to the coaching of dr. joy browne, senior nidcap master trainer, two staff members obtained their nidcap certificate. nidcap observations were regularly performed and became a part of the routine practice of modifying the environment, positioning infants in the incubator and adapting the organization and delivery of caregiving. all of this was achieved in the framework of a personalised approach, with the parents’ collaboration. local workgroups, including the multidisciplinary team and the heads of the unit helped in the implementation of nidcap. in 2005, a newly designed neonatology ward consisting of 16 rooms, 3 three-bed, 5 two-bed and 8 single rooms was inaugurated. the single room design included special spaces for the parents. the environment was adapted to best support the baby’s optimal development. progressively, as we observed the infants’ feeding behaviours, we started to reflect on our practices. at that time, babies were fed every three hours, at set times based on the caregivers’ schedules. oral feedings were supplemented by tube-feedings until discharge. infants were gradually given feedings every four hours in preparation for going home. parents were not involved in tubefeeding and, when they were not present, bottle feeding was used regularly even for breastfeeding infants. full breastfeeding rates by the time of discharge were low, around 20%. through our observations of infant behaviour, we realised babies were often fed when they were not ready or emotionally available. we also understood we were not attentive enough to some of the infant’s early and subtle attempts at eating. when we did notice their rooting behaviour and tried to meet their oral needs, it was mostly late towards the end of caregiving, when the infant had already spent a lot of energy. the information we reported on and shared among caregivers only concerned feeding methods and volumes of intake. there was no communication about the infant’s behaviour during the feeding, the quality and success of the feeding itself, the parents’ involvement in feeding, or what suited each baby best. aims the nidcap observations gave us details on some infants’ individual behaviours during feedings, suggesting the need for individual practice changes. because these findings were recurrent, we became aware of the necessity to modify the unit’s general feeding practices. in 2006, with this aim, we formed a multi-disciplinary work group including the unit’s leaders and reviewed relevant literature on the topic of feeding competence in preterm infants. the issues we wanted to address were the following: • how to reduce negative oral stimuli and encourage natural, positive experiences. • when to introduce the premature infant to their first feeding experience. • what is a successful feeding and how to provide a consistent and relaxing environment to support the baby’s developing competency? • how to manage tube feedings whilst facilitating the development of the parent-infant bond and their nurturing relationship. • how to adapt feeding schedules to phase in semi-demand feedings without systematically supplementing them by tube feeding. • how to increase full breastfeeding rates at discharge from the nicu. • how to convey information related to an infants’ feeding including but also going beyond the notion of volumes of intake. methodology review of the literature, visits to other units, and dialogue with experts in preterm infant feeding competencies enabled us to: • develop new work objectives and a new feeding protocol based on each infant’s individual behaviour and competence, which, in turn, enabled us to phase in semi-demand feeding. • stop using bottle feeding instead of breastfeeding and consider the use of alternative methods when parents were absent. • develop new monitoring forms detailing observations of sucking, swallowing, and breathing coordination. the notes also documented any modification of the infant’s physiologic parameters recorded during feedings, information about their behavioural state during feeding, the quality of the feeding, the infant’s distal and proximal environment, feeding methodology, and who fed the infant. • create an educational feeding brochure and organise weekly information meetings focussed on the parents. • work on the environment to facilitate the infant’s tucked position and offer them the opportunity to access and explore their fingers orally. • stop the practice of stimulating sucking during feeding by moving and pushing the bottle into the baby’s mouth. evolution of national guidelines to support the development of preterm infants’ feeding competencies and breastfeeding inge van herreweghe, delphine druart brussels nidcap training center, saint-pierre hospital, brussels, belgium doi: 10.14434/do.v14i2.33000 developmental observer • 2021 • 5 the whole team received theoretical information and training in the use of the new feeding protocol, the observation sheets and adapting the infant’s environment. results following implementation of the changes previously discussed and of the new protocol, we observed that: • infants started their feeding experiences earlier. • the quality of the feedings was addressed. • gradually involving parents in tube feeding was encouraged and facilitated interaction between the nurse, the parents, and the infant. • full breastfeeding rates at discharge increased. • instead of fewer feedings with larger volumes which were difficult for infants to manage, up to 8 12 smaller feedings were provided until discharge. • infants were developing their feeding competencies at their own pace without spending all their energy. this, in turn, enabled them to keep on developing their other competencies until discharge. continued integration of developmentally supportive feeding practices in 2007, we became a nidcap training centre and continued trying to maintain good practices for feeding preterm infants. we also advocated promoting the feeding protocol through our nidcap training sessions in other belgian and french hospitals, in nursing schools, and at conferences. progressively, we worked at reinforcing parental presence and their stay within the unit, which led to increased parental involvement in tube feeding. this was made easier through skinto-skin holding and skin-to-breast feedings. it was also facilitated by the opportunity for parents to sleep next to their baby. expansion to a national focus from 2014 to 2016, saint-pierre chu supported the transfer of delphine druart, nidcap trainer, to the public health ministry to assume the role of developmental care coordinator. her task was to promote nidcap and developmental care at the national level, in collaboration with kelly janssens, rn (currently a nidcap trainer-in-training at uz leuven, belgium). study days for staff at belgian hospitals were organised. meetings with teams occurred to inform and help them assess their practices and identify possible areas for change. within this context, the public health ministry decided in 2015 to set up an inter-hospital multidisciplinary workgroup to establish national premature infant feeding guidelines. many paediatricians, nurses, speech therapists, nidcap experts and breastfeeding advisors from different hospitals took part in the project. in 2018, the guidelines were completed and translated from french into dutch because national guidelines can only be published if they are in both country languages. the guidelines were sent to all belgian hospitals and made available on the public health ministry’s website. at the same time, we observed that many babies continued to receive feedings infused by a feeding pump every 1-2 hours as volumes of intake progressively increased. we then decided, together with dr. marie tackoen, head doctor of the nicu since 2015, and dr. inge van herreweghe, head of the clinic and the nidcap training centre since 2015, to allow pump feedings only on medical advice and after having first tried split and/or paced tube feedings, based on the infant’s behaviour. to achieve this, we involved parents by helping them provide tube feedings for their baby while monitoring the infant’s breathing and behaviour, interspersing the feeding with breathing breaks as needed. as a result, most babies who are tube fed receive parental skin-to-skin during a tube feeding by gravity flow instead of administered by a feeding pump. we also acquired more portable breast pumps, trained two breastfeeding advisors, and updated a breastfeeding brochure enabling mothers to monitor their daily milk production volume. all staff members in our unit were invited to attend free ongoing four-day breastfeeding training within the hospital. supporting breastfeeding in 2019, we developed a programme enabling us to transfer the mother and baby from the delivery room to the maternity and neonatal wards whilst keeping them skin-to-skin. the programme also allowed us to prolong the skin-to-skin time to at least 10 hours a day. in fact, this scheme had first been set up in the framework of a pilot project in our non-intensive neonatal unit (koala unit), where parents have been able to stay with their baby 24 hours a day since 2017. in the context of this program, we developed a new feeding method no longer based on the infant’s weight gain after a breastfeeding. we now assess the quality of the breastfeeding by using the fleur de lait”,1 a breastfeeding scale derived from the premature infant breastfeeding behaviour scale (pibbs).2 to proceed safely and cautiously, we tested this new protocol first on stable late preterm infants. of course, we help parents acquire progressive autonomy in the use of this method which works as follows: • the doctor prescribes a minimum daily volume of intake for the baby. • the nurse then calculates an hourly amount. • a maximal lapse of time between two feedings is defined by the team. • if the baby does not wake up at the end of the maximal lapse of time, the baby is fed by tube. if the baby breastfeeds, the fleur de lait score is calculated. if the score is less than 12, the baby’s intake is supplemented by a tube-feeding. the volume of this supplemental feeding is calculated according to the number of hours elapsed since the latest feeding deemed efficient (i.e., the score was higher than 12). this way, the baby is fed at their own pace as soon as they show signs of wanting to be fed. at the beginning of 2020, we extended this practice to infants in the neonatal intensive care unit. the whole team at6 • 2021 • developmental observer tended an information workshop. depending on the evaluation of this project, we hope to extend this protocol to even younger infants less than 34 weeks. the infants who experience this feeding regimen and longer skin-to-skin periods, reach the full breastfeeding phase earlier and are discharged sooner. we are assessing the impact of this approach on infant stability, age of autonomous feeding, age of discharge, and on the parents’ and team’s satisfaction. we hope to share these results in the future. as a part of the previous developmental feeding project, we set up a peer-to-peer breastfeeding support programme. we developed it with the help of volunteers who are parents of babies who stayed in our unit. the parents first benefited from an interview with the team’s psychologist, followed by training in breastfeeding, developmental care, and premature infant feeding. this project will also be evaluated as to the parents’ and volunteers’ satisfaction. we hope to also share these results soon. summary our goal is to make feeding a time of pleasure and bonding for babies and their parents. we are pleased that now 75% of preterm babies are receiving their mother’s milk on discharge from the neonatal unit. we are proud that these projects could go on even in covid-19 times. references: 1. petit i, grattepanche c. accompanying the progression of the premature baby at the breast thanks to the "fleur de lait". journal de pédiatrie et de puériculture 2012, 33(268):44-46, doi: 10.1016/j.spp.2012.07.011 2. lober a, dodgeson je, kelly l. using the preterm infant breastfeeding behavior scale (pibbs) with late preterm infants. 2020, clinical lactation 11(3), doi: 10.1891/clinlactd-20-00001 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org developmental observer • 2021 • 7 the nfi thanks waterwipes for their sponsorship of the 31st and 32nd annual nidcap trainers meetings waterwipes are the world’s purest baby wipes, made with just 99.9% water and a drop of fruit extract. waterwipes have been specifically developed to be purer than cotton cloth and water, while offering the convenience of a wipe. waterwipes provide safe cleansing for the most delicate newborn skin and can be used on all babies including preterm babies. www.waterwipes.com 20, 21*, 22 october 2021 1800 2130 gmt virtual meeting, hosted by the nfi (full meeting attendance is by invitation only) *thursday, october 21, 2021 annual nfi membership meeting all sessions open to all nfi members sponsored by: always together: improving the future for babies and families calling all members of the nfi we would like to include more stories, poetry or reflections from the nfi membership. if you have a story to tell, a reflection about your nidcap experience or some poetry you have written inspired by nidcap then please send to the editor. developmentalobserver@nidcap.org developmentalobserver@nidcap.org 8 • 2021 • developmental observer column editor – debra paul, otr/l fa m i ly v o i c e s a miraculous journey by eleni gerassis i would like to share my miraculous story with you. while it was a nightmare experience, it is a story with a happy ending that has changed our lives for the better. my husband and i appreciate how blessed we are and are determined to help make a difference in the most crucial beginning of a baby’s life. life was perfect. mario and i had been married for three years with our beautiful little two-year-old sophia. we were so happy to find out we were expecting our second child. at the 20-week ultrasound, we were told everything was normal and that we were having a little sister for sophia, something i always dreamt about. we named her dimitra (dimi). at just 24 weeks pregnant my dream turned into a living nightmare. i knew something was wrong. i was so sick, not able to move, and my baby wasn’t moving. after extensive tests and consultations an initial diagnosis of congenital cystic adenomatoid malformation or otherwise known as ccam, was made. ccam is a rare abnormality in an infant’s lung development and the medical team predicted a 10% chance of survival for dimi. for us it was a chance worth taking. we were rushed to the obstetric hospital where i stayed for one month on complete bed rest to prolong dimi’s birth and give her that extra chance to survive. upon arrival to the hospital, both my unborn baby and i required special surgeries to drain large volumes of fluid from our bodies. i also had a rare in utero procedure that involved placing a shunt (drain) into the cyst growing inside dimi’s chest that would be removed during surgery after her birth. at 30 weeks, i gave birth at westmead hospital. it was mother’s day 2008 and a mother’s day i will never forget. it was not your normal natural delivery. the room was filled with doctors and nurses explaining to us the possibility our baby might not survive and that she would be taken from us at once following the birth for urgent assistance. when dimi was born, she was not breathing. once she was stabilized, dimi was placed on a ventilator and later transferred to the grace centre in preparation for surgery. we prepared for the worst and cried enough tears to fill a dam! our supportive family, who we are so grateful for, stepped in with love and around-the-clock care for our two-year-old, sophia, allowing mario to constantly stay by my side in hospital. four days after dimi’s surgery, her surgeon, the wonderful dr. soundappan, confirmed the growth in dimi’s chest was a benign teratoma tumour and that all 500g of it had been successfully removed from her tiny body. dimi’s weight was now approx. 1.5kg and mario’s wedding band fit around her ankle. unfortunately, i did not have the pleasure of holding my dimi for weeks and touched her through holes in her incubator. when i finally did get to hold dimi, she was attached to machines. i felt robbed. i didn’t want photos, gifts or anything that would remind me of her as i was so worried we would lose her. this was my way of dealing with things at the time. no beautiful flowers or congratulations. no going home with our baby. my time was filled with spending the days with her, and then having to leave her every night. leaving her was absolute torture, even though we knew she was in the best hands. dimi spent the next four months in the newborn intensive care unit attached to a special machine to help her breathe and a feeding tube to help her grow enough to go home which she did. our precious dimi came home with us on father’s day. i thank god every day for blessing me with the most supportive husband who not once left my side and my two precious daughters, sophia and dimitra who everyday remind me about the true meaning of life! dimi, i am convinced you were brought dimi following surgery doi: 10.14434/do.v14i2.32999 getting through a traumatic experience is something that takes hold of one’s life. eleni’s experience in the nicu ignited a passion within her and her family has followed in her footsteps. we are very appreciative to parents that take a leadership role in enhancing the lives of infants who are sick or who are born prematurely. support from parents that have gone through a similar experience is invaluable and helps families navigate through what is often one of the most challenging times in their lives. developmental observer • 2021 • 9 on this earth for a reason…to show us all to be fighters and to never give up. thank you, dimi, for making me the person i am today. my husband and i made a promise to ourselves and our little dimi that we would do everything possible to give back to the amazing work that saves critically ill newborn babies lives daily. we will be eternally grateful to the grace centre for newborn intensive care at the children’s hospital at westmead for the lifesaving care our daughter received. the dedicated professional team at grace centre go above and beyond their call of duty, not only caring for critically ill newborn babies, but also supporting the families during the most traumatic experience of their lives. my family and i have supported this amazing facility over the past 10 years raising over $250,000, purchasing lifesaving medical equipment, renovating various rooms within the unit, and contributing startup costs towards the australasian nidcap training centre within grace. after many years of fundraising for this cause so close to my heart, two years ago i was honored to be invited to join the board of directors of nidcap australia. through the many initiatives of the australasian nidcap training centre, i can see how the programs are helping the babies and their parents at the grace centre. dimi often tells me when we are organizing our fundraising initiatives, ‘mum, i really love getting involved, it makes me happy, and i really care about the sick babies.’ hearing this warms my heart and reinforces to me how important it is that we appreciate all that we have and what we have been given. it also reminds me that i do what i do to help make that little bit of a difference for other families going through one of the most terrifying experiences one could ever go through whilst also supporting an amazing facility that cares for the country’s sickest babies on a daily basis. neonatal intensive care units would not exist without the experienced, dedicated and highly trained staff that are required to care for our critically ill babies. dimi is now a healthy and bright 13-year-old in year 7 and absolutely loving high school. she is doing extremely well in all her subjects and tells us how one day she would love to be a “baby nurse”. we are so proud of the young woman dimi is growing up to be. she is a caring individual with a compassionate nature and determination to do well. one of most emotional and proudest moments for all of us was at the end of dimi’s last year at primary school. she became student leader, and at the year-end award’s ceremony dimi received the one and only citizenship award. this award was given to a child who has always displayed continuous service to the school community, always puts others before herself, and is an active member in the school community. i am proud to say both my girls are always the first to put their hands up when it comes to taking part in any school or community fundraising events or even just to simply lend a helping hand to their friends and family. eleni, sophia and mario enjoying the much-awaited time for a cuddle. dimi (right) with her sister sophia participating in the fundraiser race for grace bike marathon a special bond formed between dimi and kristen james nunez, nurse practitioner and nidcap professional. photo taken at the annual grace gala event 2021. 10 • 2021 • developmental observer neurodevelopmental supportive care in a rainbow nation south africa, the rainbow country at the tip of the african continent, is home to a population of 65 million people. it is a country that is divided into nine provinces, with 11 official languages and cultural and ethnic diversity. four major ethnic groups are evident in south africa with various sub-groups (department, 2019; sa-v; statista, 2021). in addition, the country comprises urban, semiurban and rural to deep rural areas. the birth rate for south africa in 2020 was 19.995 births per 1000 people (macrotrends, 2021), (1,171,219 births in total for the year 2019) (department, 2019). in south africa the preterm birth rate was 12.4% in 2014 representing one out of every ten births (chawanpaiboon et al., 2019). premature babies are born and cared for in various economic areas, but care may differ dramatically due to the available human and other resources. neurodevelopmental supportive care (ndsc) is a widely known but fragmentally implemented care model in the south african context. a variety of researchers from different disciplines conducted studies on various components of ndsc over the last two decades and this article aims to provide an overview of the development and adoption of ndsc in the south african context. the first training on developmental care was presented in 2001 in pretoria by professional nurse, sonja willemse, to a small number of healthcare professionals, consisting primarily of nursing professionals. thereafter some components were incorporated in neonatal care by individuals, however changing the culture to ensure that neurodevelopmental care became the underlying model of care in all neonatal units across the country, has proven to be challenging. while working in the nicu, i (the author) realised that we, as hospital staff take on the ‘ownership’ of the babies in our care, and parents are not empowered for their parenting role. during 2003, i explored parental needs while their babies were admitted to the nicu in south africa, with the aim to develop an early intervention program to restore the parenting role for parents while their babies were admitted to the nicu. after completing my master’s degree, i developed the first south african, evidence-based website for parents with preterm infants in nicu: www.littlesteps.co.za (2004). the idea was that we can provide an information platform where information can be updated quickly, and that each unit could have a computer for parents to access the information. this was before smartphones took over the world. the reality for both private and public sector was, that parents only had access to this information from private resources, such as a home computer or internet café. as a result, i started to present preterm parenting workshops for parents in my geographical area, in a format similar to that of ante-natal classes, but with the focus on preterm development and care. parents’ feedback was that they ‘learned more in four hours than in 60 days in the nicu’ and that ‘staff do not know this information’. i then realised that more must be done to ensure implementation of ndsc in all clinical facilities during 2005, little steps, took over the professional 2-day training workshop, expanded it to a 3-day workshop to include preterm feeding, and in 2006 registered the little steps premmies trademark and added an additional training: little steps premmie parenting facilitators. i believed that parents in every hospital should have access to information about their premmie’s development and care in a structured format, therefore training more presenters of the parenting workshop seemed like a global perspectives of developmental care south africa welma lubbe phd, mtech, rn, adv m, ne, bsoc sc professor, school of nursing science/ numiq research unit, north-west university, potchefstroom campus, south africa doi: 10.14434/do.v14i2.33002 little steps parenting website: www.littlesteps.co.za www.littlesteps.co.za developmental observer • 2021 • 11 solution. interestingly, enough parenting workshops were more evident in the public sector with the private sector taking much longer to adopt. during my work in the nicu and with parent support and healthcare professional training, i realised that having a website (at that point in time) was not the most effective means of communication. parents wanted to have something to read in their hands while sitting next to their baby in nicu. as a result, the full color illustrated book: prematurity – adjusting your dream (lubbe, 2008), was born and published in 2008. it has since proven to be a valuable resource for parents and professionals working with premmies and got feedback that it really carried parents through their nicu journey – feedback for which i am very thankful. the second edition of the book is currently in preprint format and should be available during 2021. awareness of developmental care grew during this time, with many healthcare professionals embarking on studies in this field but focusing on selected aspects of the care model some focussed on sensory integration issues, while others focussed on kangaroo mother care or parental support. developmental care was still not the underlying model used in the nicu, but rather a nice-to-have add on. however, in the process, some supporting products have been developed and manufactured within south africa, such as the little steps nest. i obtained my phd in nursing in midwifery and neonatal nursing from the north-west university, in south africa, and my dissertation was entitled the development of ‘best practice guidelines for neurodevelopmental supportive care of the preterm infant in south africa (lubbe, 2010). the first phase of the study was to identify the components of ndsc to determine how we could implement this in the south african context while programs such as nidcap were considered too expensive and time intensive for the south african context at this time. some important publications followed from this research and are used in clinical practice, such as the ‘integrative literature review defining evidence-based neurodevelopmental supportive care of the preterm infant (lubbe et al., 2012) and more recently the publication of ‘best practice guidelines: neurodevelopmental supportive care of the preterm infant – condensed guide for clinicians (lubbe, 2019). further research in the field of ndsc then funded by the national research fund (south africa) from 2012-2015 and implementation became more evident with post-graduate students from various universities and a variety of professional disciplines working on this topic. to highlight some work in this field, the following authors studied some component of ndsc. • hennessy (2006) obtained her phd on ‘facilitation of developmental care for high-risk neonates: an intervention study’ • nieder-heitmann (2010) conducted her study on ‘the impact of a sensory developmental care programme for very low birth weight preterm infants in the neonatal intensive care unit’. • lecuona (2012) completed her research on ‘sensory integration intervention and the development of the extremely low to very low birth weight premature infant. • du plessis-faure (2019) obtained her phd on ‘a model for nurses to facilitate mothers' caring of their preterm infants in an informal settlement, gauteng’. • in 2020 dr. alet rheeder obtained her phd titled: ‘implementation strategy for neurodevelopmental supportive care best practice guidelines in south african context’ (rheeder, 2019) and successfully integrated ndsc in a private hospital group were ndsc is now part of the auditing structure of care. • dr. lizelle jacobs completed her phd titled: ‘the implementation of a multi-disciplinary, neurodevelopmental supportive care training program related to preterm infants in the south african public health sector (jacobs, 2020) • dr. susan davis-strauss her phd titled: ‘developing a hospital-to-home transition programme to support south african parents of premature infants admitted into neonatal wards in public hospitals (davis-strauss, 2021). currently the aim is to support hospitals towards sustainable implementation of ndsc in their hospitals by means of a leadership program based on the kouzes and posner transformational leadership theory: the indesc study. this study has been funded by the south african medical research council since 2018, with a pause in implementation in 2020 due to covid-19. little steps nest public sector change 12 • 2021 • developmental observer participants currently include both public and private hospitals across the country. the initial phase of the study was the identification of champions in the participating hospitals to act as project coordinators within their facilities. these champions were then provided with leadership training based on the kouzes and posner leadership theory and thereafter they are supported for a period of 10 months to implement the various components of ndsc in their facility: 1) positioning, handling and kmc, 2) pain management, 3) neurosocial development, 4) environment and sensory management, 5) feeding and non-nutritive sucking, 6) breastfeeding in the nicu, 7) individualised, family-centered care, 8) transport, 9) procedures using ndsc, and 10) hospital-to-home. assessment of the status of ndsc is done before, midway and after the implementation of the various components, and champions experiences of the implementation is also determined to provide valuable information for scale-up of ndsc implementation. the indesc tool is used to determine the level of implementation of ndsc in participating units and provides a guideline on areas that require attention. for parents in the south african context there are some facebook peer support groups available such as neonatal buddies, littlelittleprem, parents of premature babies – cape town, to name a few. in addition, there is the little steps online parenting workshop (little steps, 2021) as well as in-person premmie parenting workshops in selected hospitals. implementation of ndsc in a country such as south africa that is so diverse in terms of resources and location, is a challenging undertaking. however, with healthcare professionals having the best interest of these tiny patients and their parents at heart, unexpected and impactful change can be seen across the country. references chawanpaiboon s, vogel jp, moller a.-b, lumbiganon p, petzold m, hogan d, ... laopaiboon m. global, regional, and national estimates of levels of preterm birth in 2014: a systematic review and modelling analysis. the lancet global health, 2019,7(1):e37-e46. davis-strauss, s. 2021, developing a hospital-to-home transition programme to support south african parents of premature infants admitted into neonatal wards in public hospitals. university of pretoria. department, s.s.a.r.o.s.a. 2019. mid-year population estimates statistical release p0302. https://www.statssa.gov.za/publications/p0302/p03022019.pdf date of access: 31 may 2021. du plessis-faurie, a.s. 2019. a model for nurses to facilitate mothers' caring of their preterm infants in an informal settlement, gauteng. university of johannesburg. file:///c:/users/21547173/ downloads/du%20plessis%20fourie%20etd.pdf.pdf hennessy ac. 2006. facilitation of developmental care for high-risk neonates: an intervention study. university of pretoria. jacobs l. 2020. the implementation of a multi-disciplinary, neurodevelopmental supportive care training program related to preterm infants in the south african public health sector. wits. lecuona er. 2012. sensory integration intervention and the development of the extremely low to very low birth weight premature infant. university of the free state. little steps. 2021. little steps online parenting workshop. https://littlesteps.co.za/online-parenting-workshop/ date of access: 7 july 2021. lubbe w. 2008. prematurity: adjusting your dream. little steps. lubbe w. 2010. best practice guidelines for neurodevelopmental supportive care of the preterm infant. north-west university. lubbe w. 2019. best practice guidelines: neurodevelopmental supportive care of the preterm infant – condensed guide for clinicians. potchefstroom, south africa: little steps. lubbe w, van der walt cs, klopper hc.. integrative literature review defining evidence-based neurodevelopmental supportive care of the preterm infant. j perinat neonatal nurs, 2012, 26(3):251-259. 10.1097/jpn.0b013e3182650b7e macrotrends. 2021. south africa birth rate 1950-2021. https://www.macrotrends.net/countries/ zaf/south-africa/birth-rate date of access: 31 may 2021. nieder-heitmann e. 2010. the impact of a sensory developmental care programme for very low birth weight preterm infants in the neonatal intensive care unit. stellenbosch: university of stellenbosch. rheeder a. 2019. implementation strategy for neurodevelopmental supportive care best practice guidelines in south african context’ potchefstroom: north-west university. sa-v, s.a. south africa languages and culture. https://www.sa-venues.com/sa_languages_and_ culture.htm date of access: 31 may 2021. statista rd. 2021. total population of south africa 2019, by ethnic groups. https://www.statista. com/statistics/1116076/total-population-of-south-africa-by-population-group/ date of access: 31 may 2021. the hospital after the renovation developmental observer • 2021 • 13 if you have a product of interest to the nfi membership and would like to place an advertisement in the developmental observer the benefits include: » distribution and reach to the 250 members of the nfi, plus an additional 300 people receiving nfi news » potential reach to thousands of readers of the developmental observer via the nfi website and multiple social media platforms » developmental observer is indexed through scholar works, ebsco (us based library database abstract and indexing service) and google scholar. » sponsor information available to key health care professionals and policy developers for newborn care advertising in the developmental observer do gold sponsorship do silver sponsorship do bronze sponsorship half page promotion text (100 words), logo and additional image in the developmental observer for one year (2 issues). one quarter page of text (50 words), logo in the developmental observer for one year (2 issues). one eighth page of text (50 words), logo in the developmental observer for one year (2 issues). corporate sponsor rate $3,000 usd $1,500 usd $750 usd institution/organization (conference) rate $1,000 usd $500 usd $300 usd nidcap care in the moment u sed w ith perm ission shared family time 14 • 2021 • developmental observer introduction the purpose of this nidcap report describing the chui nidcap training center is to share our history, experiences and to develop some recommendations for its future development and the development of other training centers. chui’s environment chui is a “hospital within a hospital”, part of ui health, a hospital on the west side of chicago affiliated with the university of illinois at chicago (uic). chicago is well known for its international population; this multi-cultural environment and the hospital’s mission of serving the underserved has given ui health a distinct culture and identity. the nidcap philosophy aligns with this mission as we develop a thoughtful and educated staff through various colleges and training programs. activities before training center establishment it is amazing to reflect that the nidcap journey at uic began 30 years ago! in 1991 our unit was devoid of developmental care. rooms were brightly lit, radios played at night and it was not unusual to see babies in incubators who scooted themselves to the sides of the incubator, looking for boundaries that we did not know they wanted! in the early 1990’s a small cohort of nurses were nidcap trained (thanks to a large grant that supported gretchen lawhon and rodd hedlund as trainers). in addition, all nursing staff had mandatory education in basic developmental care, and we became more aware of our practice. in 1998 uic received a grant from the harris foundation to establish a nidcap training center in chicago with dr. als as trainer. in january 1999, dr. als arrived with 2 suitcases dedicated to slide carousels and vhs tapes to do her lectures! thank goodness some things have changed! as we trained we began steps to improve our practice with staff education and formation of a developmental care committee and began staff education. a real breakthrough came when our nicu manager, beena peters, picked up much of jennifer’s salary from the therapy department in order to ensure dedicated time for her nidcap training. activities during our training center work jean and jennifer were certified as nidcap professionals in 2001 and as apib professionals in early 2003. jennifer began her trainer-in-training process in late 2003 and jean in 2004. two years later, in june 2006, we celebrated the opening of the nidcap training centers around the world children’s hospital university of illinois (chui) nidcap training center 10.14434/do.v14i2.33003 in honor of the chui nidcap training center’s 15th anniversary, and ui health’s 30 years of nidcap affiliation, we offer this nidcap report describing our training center. name: chui nidcap training center observers/authors: jean powlesland and jennifer hofherr date of birth of training center: june 2006 date of report: june 2021 center director at time of center birth: beena peters current center directors: jean powlesland and doreen norris-stojak developmental observer • 2021 • 15 training center with a half day conference and a gala celebratory dinner at uic. the chui nidcap training center has trained in wisconsin, iowa, minnesota, ohio and illinois. internationally we have trained in lebanon and saudi arabia. we have also presented nidcap topic lectures at conferences or seminars in poland, canada and the u.s. in addition, as fine trainers, our team has trained in four different states thus far. in 2013, jennifer left uic to become the therapy manager for the nicus operated by nationwide children’s hospital in columbus, ohio. we are fortunate to have her still affiliated with our training center, and she has been instrumental in our recent training in saudi arabia. activities after the training center we are still very much active and hope to be around for the foreseeable future!!! summary one of our great privileges was to have dr. als as our trainer for all three phases of our training. with each visit and interaction we learned so much from her. she had an uncanny ability to set the stage for our next phase of learning/integration. often something she said at one visit may have gone over our heads, but by the next time we had that “aha!” moment, of “now i understand!” one very important lesson we learned from her was to be flexible and innovative in supporting people to connect to the nidcap concepts, a lesson we have taken to heart in working across languages and cultures. recommendations: • consider how best to deal with the reality of changing financial and staffing constraints. if your unit has limited nidcap professional time, consider how to use your resources most effectively. o at chui, we shifted the work of our therapy team from only working with stable premature infants to becoming involved with all high-risk infants from admission. o we adapted the “sort” tool concept, developed by carol matthew and ginny laadt to help us pinpoint how to best utilize our resources. the system of risk triage helped us to identify the level of adverse developmental outcome the family-infant system faces, and to target resources accordingly. o we developed streamlined, individualized information for parents of the moderate preterm infants that may not qualify for therapy or nidcap referral. o we did “assessment in action” by providing 2-person support to babies during routine care, using both our nidcap and apib skills for assessment to write up a summary, goals and recommendations. o we developed “love letters”, a collaboration between developmental therapy and family support, using an 20th annual nidcap trainers meeting held on chicago original ui health nidcap team at the center opening gala. from left to right: back row: kristen grief, rn; jean powlesland rn, pamela klosta, pt. front row: agnes kutek, rn, suzanne herrera, rn, heidelise als, noel cortescaston, rn and jennifer hofherr, otr/l 16 • 2021 • developmental observer infant mental health framework to provide individualized, developmental information in the baby’s voice. • consider how to meet the need for mental health support in your unit, both for families and for staff. o we created a “family support specialist” position. in 2011, we hired our first family support specialist, jeanine klaus, ibclc, who was one of our first trainees after our training center opening. when she left to care for her aging parents in 2016 we hired jessica bowen, lcsw, nidcap professional and infant mental health certified who could use that knowledge to great effect to support families. when she left and just as the pandemic hit us, we hired sarah davey, a licensed professional counselor who had worked in a similar role in tampa, florida. each of these individuals grew the role and it has certainly convinced our nicu how critical a mental health professional is for our operations. the staff can attend monthly reflective sessions held on all three shifts. • consider how to be innovative and ahead of the curve when it comes to training and education. o the pandemic has forced everyone to embrace electronic means of communication, and we have learned to adapt our training to some degree. we piloted doing virtual reliability sessions with a few of our trainees in saudi arabia in order to give feedback to the nfi. this has been an interesting experience, while also yielding more information on what aspects we need to improve. • consider how to make change happen, keeping in mind the culture and leadership of each unit, and consider how to provide unit wide, comprehensive education on basic concepts of developmental care. o for example, after we were nidcap certified, we did routine nidcap observations on our high-risk infants. however, the nurses were very inconsistent in their understanding of the goal. bedside coaching only reached a small proportion of the staff. so instead our focus shifted to staff education, especially new hires. this more effectively changed culture. o one of the reasons we became fine trainers (u.s. fine led by joy browne) was because we saw the value of staff having a comprehensive basic level of education to facilitate change. as trainers-in-training, it may be too time consuming to create and deliver education to all staff, so having a program like fine is very useful. • consider ways to support those nidcap professionals or individuals invested in developmental care who may not have a network to support them. o we felt this was an important goal and inspired the creation of the midwest developmental care conference. a collaboration with trainers linda lacina and tammy casper in cincinnati and has been a recurring event since 2013. • consider ways for your center to experience and see what others do, and to help your trainees envision a more advanced nidcap care. o we had such limited developmental care experience before 1998 that we had difficulty imagining what nidcap care looked like. we appreciated the opportunity to see nidcap in practice in other units. we visited the former nidcap training center in milwaukee and jean went to the centers at university of connecticut and st. luke’s in boise, idaho. thanks to laura davis, dorothy vittner, cathy daguio, and karen smith who were so gracious with their time as well as linda gilkerson of the erikson institute, who volunteered her time for reflective sessions during our training. others advised us on logistics of operating a training center, so a big thank you to jim helm, laurie mouradian, karen smith and joy browne. o for trainees who do not have experience with developmental care, help them envision what is possible by sharing some inspirational examples through video. • consider how to adapt your teaching methods while working in different health care systems and international cultures. o training in places where the language, traditions, perspectives on families and the organization of the health care systems is different can be most illuminating. examples used in our own unit may not be relatable elsewhere. adapting your consultative advice based on how the health care system is organized is important also. o we spent time reflecting on how best to assess progress in training when a trainee’s written skills or language barriers might limit the communication of nuanced or subtle concepts. jean and jen getting ready to go to saudi arabia in 2018. developmental observer • 2021 • 17 reflective note over the years we have seen many changes in the units that we have worked in. the resistance to developmental care practices that was so common when we began is now rarely seen. the challenge is not convincing people to do it, but more about overcoming the many barriers of how to do it. reducing those barriers is key to sustained change. the nidcap nursery program provides a pathway and a list of outcomes to achieve. however, in hindsight we as trainers would benefit from more formal training and experience on managing those change processes. sustainability is critical also. perhaps one of the unhappy legacies of the pandemic is realizing how vulnerable some of our work is in face of a global emergency. and while culture change at the unit or hospital level may have happened, larger government agencies may have a different perspective and the power to override your practice. still, with each year we see such positive adoption of the nidcap philosophy in various formats and various ways. it is most gratifying to see how dr. als’ ideas have spread around the world! as we finish our 3rd decade of nidcap association, we don’t know what nidcap or nicu care will look like in another 30 years, or what role chui will have, but we are proud of our history and look forward to great changes in the years ahead. nicu leadership at 2019 midwest developmental conference mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 brain injury remains one of the major unresolved challenges in neonatal care. with improvements in the overall survival rate of newborn infants, it was natural that attention would shift to intact survival and good neurodevelopmental outcomes. it is widely acknowledged that neonatal brain injury is the result of the complex interaction between pathological processes, the developmental trajectory, genetic susceptibility, and environmental influences. hence, no single intervention can have a significant effect on outcomes for the infant. rather, a coordinated, interdisciplinary approach combined with precise clinical care is needed to facilitate new neuroprotective approaches to the phenomenon. this understanding has been translated into several concepts of neonatal care. two distinct examples are the "small baby unit"1 and the "neuro-intensive care nursery" ("neuro nicu").2 the two nicu modalities advocate for the implementation of uniformly standardized care guidelines, adherence to evidencebased practices, and the creation of comprehensive and multidisciplinary teams. however, while the target of the "small baby unit" is the unique population of extremely low gestational age (elga) infants, the target population of the "neuro nicu" includes all newborns at risk of brain damage, including full-term infants with hypoxic ischemic encephalopathy (hie) or suffering from strokes or seizures, as well as elga infants. furthermore, the concept of the "small baby unit" focuses on optimization of care for these uniquely vulnerable infants in the context of parent-centered care principles. the "neuro nicu", for its part, relies on the use of advanced technology such as modern neuromonitoring and neuroimaging, as described in the target article. so, despite the common goal of improving developmental outcomes, the two models for preterm infant care differ greatly. severe intraventricular hemorrhage (ivh) and white matter injury are associated with a significant risk of adverse neurodevelopmental outcomes and remain a persistent challenge for preterm infants. the first 72 hours after birth present with the greatest risk of brain injury and is considered "the critical window" for intervention and preventing neurological damage. many quality-improvement (qi) projects aimed at preventing ivh focus on this critical period. the study by deshpande et al., "combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants", is a prospective observational cohort study investigating the feasibility and safety of advanced cerebral and hemodynamic monitoring in this population of vulnerable infants during this sensitive period. study details fifty infants born between 23+ 0 and 27+ 6 weeks gestation were enrolled on the study. the infants had all been managed using an ivh prevention bundle, which included midline head positioning and minimal handling. cerebral regional oxygen saturation (crso2) and integrated eeg (aeeg) were measured continuously, and echocardiography (echo) and head ultrasounds were performed 2-4 times. the small head size, fragile skin, coexisting headgear with an interface for ventilatory support, and high ambient incubator humidity all made sensor application challenging. however, the study demonstrated that the combined monitoring approach was feasible with 98% of the infants. mild erythema without skin breakdown beneath crso22 sensors was noted in 8/50 subjects (16%), and desaturations were reported during 17/197 (8.6%) of the ultrasound studies. compared to infants with no ivh, infants with severe ivh (grade iii/iv) showed a different pattern of cerebral and systemic hemodynamics. specifically, changes detected by nearinfrared spectroscopy (nirs) showed low crso2 and high cerebral fractional tissue extraction, consistent with physiological changes related to hypoxia-reperfusion – known to be one of the risk factors for ivh.3 however, since the study was not designed to identify specific variables predicting ivh, along with the low incidence of severe ivh (8%), the clinical relevance of this observation could not be assessed. the authors concluded that cerebral and cardiovascular multimodal monitoring for elga infants is safe and well-tolerated, with a low adverse event rate. technological advances the technological development of non-invasive bedside techniques over recent years has allowed the bedside monitoring of heart function and hemodynamics by functional echo, combined multimodal cerebral monitoring and focused hemodynamic assessment in extremely low birth weight infants – potential benefits or potential costs? ita litmanovitz, md israel nidcap training center, meir medical center, kfar-saba, israel, affiliated to sackler school of medicine, tel-aviv university, tel-aviv, israel. nidcap & science sub-committee, nfi t h e s c i e n c e d e s k doi: 10.14434/do.v14i2.33001 18 • 2021 • developmental observer target article: combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants. deshpande p, jain ríos dr, bhattacharya s, dirks j, baczynski m, mcnamara kp, hahn c, mcnamara pj, shah p, guerguerianb am. neonatology 2020; 117:504–512. doi: 10.1159/000508961 cerebral oxygenation by nirs, as well as cerebral electrical activity by aeeg. this type of monitoring can support clinicians in identifying infants at risk of ivh, to allow for early neuroprotective interventions. functional echocardiography and nirs have been used as clinical and research tools to assess changes in systemic and cerebral blood flow and oxygenation during transitional circulation in preterm infants. it has been documented that both cerebral blood flow and cerebral oxygenation are lower for infants who develop ivh3. however, it is yet to be determined whether monitoring cerebral oxygenation, if combined with clinical interventions when cerebral oxygenation levels are outside the desired range, can prevent cerebral injury and improve neurological outcomes. a recent multicenter randomized clinical trial, the safeboosc,4 demonstrated that it was possible to reduce the burden of cerebral hypoxia during the first 72 hours of life using treatment guidelines for respiratory and hemodynamic support. however, despite reductions in cerebral hypoxia for less than half of the treatment group, there were no differences in brain injury markers between the groups: neither in the aeeg tracing, nor in specific blood biomarkers.5 the authors questioned the significance of cerebral hypoxia as an etiology for brain injury, recommending that the guidelines should not be used outside a research setting.5 functional echocardiography can provide direct assessment of hemodynamics at the bedside and can be used as a modern hemodynamic monitoring tool in the neonatal intensive care unit. this is currently regarded by many clinicians as an extension to the infant clinical examination in conditions such as neonatal hypotension and shock, suspected patent ductus arteriosus, and suspected persistent pulmonary hypertension of the newborn.6-10 the anatomic, physiological, and hemodynamic information provided by a functional echo can be used in directing specific interventions and evaluating response to treatment.6 it has been shown that a functional echo, when carefully performed by a trained neonatologist, is well tolerated even by extremely preterm infants.7 in combination with blood pressure measurement, it can provide essential information about the hemodynamic status of the newborn and enables a targeted hemodynamic management approach that can account for the underlying pathophysiologic mechanisms of circulatory failure in the individual patient.6-9 toyoshima et al. demonstrated in a prospective cohort study that tailor-made circulatory management significantly reduced both the incidence and the severity of ivh, improved survival rates, and was associated with a trend towards a decrease in mental retardation.9 an echocardiographic assessment of the hemodynamic status of the newborn has the potential to improve neonatal intensive care; however, there is still a paucity of prospective studies demonstrating improved outcomes. the combined monitoring also included recordings of an aeeg and a head ultrasound. both are used mainly to estimate the timing of the brain injury and its severity, to improve prognosis prediction.10 changes in cerebral oxygenation during head ultrasounds were reported previously for more than half of the infants;11 indeed, qi projects aiming for neuroprotection recommend postponing the first ultrasound until 72 hours after birth.12 there is more to multimodal cerebral monitoring, as pointed out by deshpande et al. the illustration in fig. 1 presents compelling proof of the possible impact of multimodal monitoring on bonding processes and parental stress – both recognized as factors that can affect long-term neurodevelopment. implications for nidcap there is a significant body of evidence showing the positive effects of sensitive and responsive maternal behavior on child development. higher levels of early maternal responsiveness, sensitivity and positive mind-set have been positively associated with infants’ cognitive and social-emotional development, supporting the proposition that healthy early mother-infant interactions can improve not only behavioral but also developmental outcomes13. the first hours after birth represent a crucial period: not only in a physiological sense, due to the hemodynamic instability and transitional processes involved in it, but also because this is a sensitive period for the mother-child interaction, setting the basis for subsequent maternal behavior. close contact between mother and child in the first hours after birth is essential, to provide the optimal conditions for the maternal behavior that will facilitate secure attachment in the first year of life. separation following birth restricts opportunities for the mother-infant dyad to engage in intimate physical contact, potentially altering the unfolding of the affectionate bond between mother and infant. in very low birth weight preterm infants, close contact between mother and child is not routinely possible. the technical environment of the baby and the architecture of nicus pose additional barriers to physical closeness. this separation hampers normal physical contact and emotional closeness between the parents and their infant, with long-lasting figure 1. premie hal® manikin (gaumard® scientific) with a crso2 sensor on the forehead and 3 aeeg sensors on the scalp, as described by deshpande et al. developmental observer • 2021 • 19 consequences for emotional programming, neurodevelopmental outcomes, and parental mental health.13, 14 several studies have reported differences in the bonding behavior of the mothers of preterm and full-term infants. mothers of preterm infants were found to show less secure attachment, as well as less acceptance of the infant and reduced caregiving sensitivity12,13 feldman et al.14 showed that the delayed first contact between mother and child led to the decrease of maternal attachment behaviors and representations. mehler et al.15 demonstrated that mothers who were able to see their infant in the first 3 hours after birth developed a more optimal maternal attachment. thus, strategies to facilitate bonding, despite the obstacles posed by the infant’s neurobehavioral immaturity and medical challenges, are an imperative in the nicu setting. moreover, these strategies need to be anticipated and intentional, designed by and considered from the different perspectives that a multidisciplinary and well-coordinated team can provide. for parents, the extreme preterm delivery of their infant will be a traumatic experience, one followed by a phase of extreme psychological disturbance. many parents feel detached and separated from their infants as they cannot or do not feel able to interact as freely with their infant as they would with a full-term infant at home. a recent meta-analysis underlines the fact that parents may be extremely distressed and disturbed by the sight of their baby attached to tubes and equipment, and by the fragile appearance of extreme preterm infants. indeed, the stress related to the physical appearance of their infant was found to be the second greatest source of burden for parents;16 so, it is of concern that the extra tapes and tubing of the multimodal monitoring approach may be an additional source of distress for both mothers and fathers. future studies must include an assessment of the impact of multi-modal monitoring on opportunities for early bonding, and on parental stress. personal reflection i should disclose that my insights on the article by deshpande et al. are influenced by my perspective as a neonatologist and nidcap trainer. after a 30-year professional career, and with the equanimity and wisdom that retirement allows, i truly believe that the biggest achievement in my career was being part of the transformative processes that my own nicu went through, to offer individualized and supportive care for infants and families in the framework of the nidcap nursery program. therefore, until more evidence is available, my answer to the first question – does combined multimodal cerebral monitoring poses potential benefits or potential cost? – is probably individualization. that is to say, individualized monitoring and individualized care in the context of family-centered care.17 accordingly, i will probably advocate for the development of "small baby units" over "neuro nicus", because they allow for the appropriate family-centered developmental care that can address the different needs of extreme preterm infants. there is a growing body of evidence suggesting that family-centered and developmental care strategies have the potential to improve neurodevelopmental outcomes, and that these need to be considered as an essential part of future neuroprotection care bundles.17 references 1. fathi o, nelin ld, shepherd eg, reber km. development of a small baby unit to improve outcomes for the extremely premature infant. journal of perinatology. 2021, 12:1-8. doi: 10.1038/s41372-021-00984-0. 2. austin t. the development of neonatal neurointensive care. pediatric research. 2019, 12-18. doi: 10.1038/s41390-019-0729-5 3. lim j, hagen e. reducing germinal matrix-intraventricular hemorrhage: perinatal and delivery room factors. neoreviews. 2019; 20(8): e452-e463. doi: 10.1542/neo.20-8-e452 4. pellicer a, greisen g, benders m, et al. the safeboosc phase ii randomized clinical trial: a treatment guideline for targeted near-infrared-derived cerebral tissue oxygenation versus standard treatment in extremely preterm infants. neonatology 2013; 104:171–8. doi:10.1159/000351346 5. plomgaard am, van oeveren w, petersen th, et al. the safeboosc ii randomized trial: treatment guided by near-infrared spectroscopy reduces cerebral hypoxia without changing early biomarkers of brain injury. pediatric research. 2016; 79(4):528-35. doi: 10.1038/pr.2015.266 6. tissot c, singh y. neonatal functional echocardiography. opinion in pediatrics. 2020; 32(2):235-244. doi: 10.1097/mop. 7. de boode wp, van der lee r, horsberg eriksen b et a.l european special interest group ‘neonatologist performed echocardiography’ (npe). the role of neonatologist performed echocardiography in the assessment and management of neonatal shock. pediatric research. 2018; 84(suppl 1):57-67. doi: 10.1038/ s41390-018-0081-1. 8. giesinger re, mcnamara pj. hemodynamic instability in the critically ill neonate: an approach to cardiovascular support based on disease pathophysiology. seminars in perinatology. 2016; 40(3):174-88. doi: 10.1053/j.semperi.2015.12.005 9. toyoshima k, kawataki m, ohyama m et al. tailor-made circulatory management based on the stress-velocity relationship in preterm infants. journal of formos medical association. 2013; 112(9):510-7. doi: 10.1016/j.jfma.2013.02.011. 10. pisani f, spagnoli c. monitoring of newborns at high risk for brain injury. italian journal of pediatrics. 2016; 14;42(1):48. doi: 10.1186/s13052-016-0261 11. murthy p, zein h, thomas s. neuroprotection care bundle implementation to decrease acute brain injury in preterm infants. pediatric neurology, 2020; 110:42-48. doi: 10.1016/j.pediatrneurol.2020.04.016 12. forcada-guex m, pierrehumbert b, borghini a et al. early dyadic patterns of mother-infant interactions and outcomes of prematurity at 18 months. pediatrics. 2006,118(1): e107-14. doi: 10.1542/peds.2005-1145. 13. korja r, latva r, lehtonen l. the effects of preterm birth on mother-infant interaction and attachment during the infant’s first two years. acta obstetrics gynecology scandinavia. 2012; 91(2):164– 73. doi: 10.1111/j.16000412.2011.01304.x. 14. feldman r, weller a, leckman jf, kuint j, eidelman ai. the nature of the mother’s tie to her infant: maternal bonding under conditions of proximity, separation and potential loss. journal of child psychology psychiatry. 1999; 40: 929–939. pmid: 10509887. 15. mehler k, wendrich d, kissgen r, et al. mothers seeing their vlbw infants within 3 h after birth are more likely to establish a secure attachment behavior: evidence of a sensitive period with preterm infants? perinatology. 2011, 31(6):404-10. doi: 10.1038/jp.2010.139. 16. caporali c, pisoni c, gasparini l, ballante e, zecca m, orcesi s, a global perspective on parental stress in the neonatal intensive care unit: a meta-analytic study. provenzi l. journal of perinatology. 2020, 40(12):1739-1752. doi: 10.1038/s41372-020-00798-6. 17. soni r, tscherning wel-wel c, robertson nj. neuroscience meets nurture: challenges of prematurity and the critical role of family-centred and developmental care as a key part of the neuroprotection care bundle. archives of disease in childhood, fetal neonatal edition. 2021 fetalneonatal-2020-319450. doi: 10.1136/archdischild 20 • 2021 • developmental observer developmental observer • 2021 • 21 p u b l i c at i o n s 2 0 2 0 2 0 2 1 below are selected publications from late 2020 to early 2021 relevant to nidcap. doi: 10.14434/do.v14i2.33004 2020 angot f, van vooren v, castex c, glorieux i. casper c. behavioral changes in preterm children during nasogastric tube feeding. comparative study of manual administration by parents versus mechanical administration via electric syringe pump. early human development. 149, 2020. doi: http://dx.doi.org/10.1016/j.earlhumdev.2020.105151 this randomized, crossover study examined the behavioral changes of preterm infants during nasogastric tube feeding: manual milk administration by parents (map) versus electric syringe administration (esa) over a 30-minute period. method: preterm infants less than 33 weeks of age and over 7 days of life were included. a video recording was performed to assess the behavioral response. fifteen preterm infants with a median gestational age of 30.1 weeks and a median birth weight of 1.210 g were included from march to october 2012. the facility, environment, and state of alertness of the infants were similar in both groups. signs of well-being were significantly more prevalent in the map group versus the esa group (36.2 ( ± 8.0) versus 30.7 ( ± 9.5)), (p = 0.04), particularly “hand-to-mouth, mouth gestures, seeking suction and sucking”. although not significant, motor withdrawal signs were more apparent and fluctuating in the esa group. qualitative analysis of nidcap observations confirms this data. browne jv, jaeger c, kenner c. executive summary: standards, competencies, and recommended best practices for infant and family-centered developmental care in the intensive care unit. journal of perinatology, suppl. 1. 2020, 40: 5-10. doi:10.1038/s41372-020-0767an interprofessional and parent committee utilized a systematic review and consensus process to evaluate the evidence for intensive care practice. infantand family-centered developmental care was described, practice components identified, and evidence-based standards and competencies articulated. consensus process results included articulation of standards, competencies and recommended best practices for infant and family centered developmental care (ifcdc), including components of systems thinking, positioning and touch, sleep and arousal, skin-to-skin contact, reduction of pain and stress for infants and families, and feeding. successful ifcdc-recommended practices provide opportunities to integrate the family with the interprofessional team, standardize practice, and improve outcomes. charafeddine l, masri s, sharafeddin sf, kurdahi badr l. implementing nidcap training in a low-middle-income country: comparing nurses and physicians' attitudes. early human development. 147, 2020. doi: http://dx.doi. org/10.1016/j.earlhumdev.2020.105092 the newborn individualized developmental care and assessment program (nidcap) provides a developmentally supportive environment for preterm infants and their families. few studies evaluated staff perceptions about nidcap implementation and its effect on infant and parents and working conditions. a cross-sectional anonymous online survey of 57 nicu staff (29 nurses and 28 doctors) who were present at least one year prior to and during the implementation of nidcap training were included. the implementation of nidcap in a low-middle income country was perceived as a positive experience for both nurses and doctors. it was thought to have improved infant care and wellbeing, as well as the staff relationship with parents, however working conditions remained a challenge. more studies are needed to address areas of improvement for implementation. eskandari z, akrami f, nejad mr, almasi-hashiani a, heidarzadeh m. assessing family-centered care in iranian nicus from perspective of neonatal individual developmental care. iranian journal of neonatology. 2020, 11(4): 87-92. doi: http://dx.doi.org/10.22038/ ijn.2020.47189.1808 this national cross-sectional study was conducted in a total of 23 nicus from nine universities of medical sciences, in seven provinces of iran. family-centered developmental care was assessed in six different domains, including the philosophy of the nursery, family communication, family support, family resources, admission and discharge planning, and decision-making. a total of 29 items, extracted from the nursery assessment manual, were assessed. the mean scores in all domains were weak, and the total score for all domains was 34.18 (95% ci: 33.75-34.60) out of 100. the mean scores were 30 in the philosophy of nursery, 43.47 in family communication, 26.71 in family support, 35 in family resources, 45 in admission and discharge planning, and 25 in decision-making. the lowest score was reported for decision-making, and the highest score was reported for admission and discharge planning. since family-centered developmental care in iran is not favorable, the obtained findings suggest the development of a suitable plan to upgrade family-centered developmental care as well as comprehensive nicu care, including developmental care. http://dx.doi.org/10.1016/j.earlhumdev.2020.105151 http://dx.doi.org/10.1016/j.earlhumdev.2020.105092 http://dx.doi.org/10.1016/j.earlhumdev.2020.105092 http://dx.doi.org/10.22038/ijn.2020.47189.1808 http://dx.doi.org/10.22038/ijn.2020.47189.1808 22 • 2021 • developmental observer eskandari z, seyedfatemi n, haghani h, almasi-hashiani a, mohagheghi p. effect of nesting on extensor motor behaviors in preterm infants: a randomized clinical trial. iranian journal of neonatology. 2020, 11(3): 64-70. doi: http://dx.doi.org/10.22038/ijn.2020.42355.1703 in this randomized controlled trial, 44 clinically stable preterm infants, admitted to the nicu, were recruited and randomly divided into two groups of control and intervention. the routine of the unit was to take care of infants on a flat mattress. the intervention was a u-shaped cloth nest in which the intervention group was bedded for seven days. the control group consisted of infants who were normally cared for without any containment supports (e.g. nests). all infants were videotaped before and on the last day of the intervention. the motor behaviors, as defined in the newborn individualized developmental care and assessment program (nidcap) sheet, were analyzed in each of the films. according to the findings, supporting the preterm infant body even by accessible materials could enhance their neurodevelopmental strengths and motor behavior stabilities. foladi n, farahani as, nourian m, faghihzadeh e, mojen lk, gholami s, goudarzi f., barriers to the implementation of "newborn individualized developmental care and assessment program" from the perspectives of nurses and physicians. iranian journal of neonatology. 2020, 11(4): 1420. doi: http://dx.doi.org/10.22038/ijn.2020.46116.1774 the study aimed to investigate the barriers to the implementation of nidcap from the perspectives of nurses and physicians. this descriptive-comparative included 100 nurses and 21 physicians working in the neonatal intensive care unit (nicu). data were collected using a researcher-made questionnaire. the validity and reliability of the questionnaire were determined in this study. according to the findings of this study, environmental-structural barriers were considered the main hurdles to the implementation of nidcap. therefore, it is recommended that hospital administrators make efforts to eradicate the existing barriers by making appropriate decisions in order to improve the quality of this method of care. khosravan s, khoshahang m, heidarzadeh m, basirimoghadam m. effect of nidcap home care follow-up program of preterm newborns on maternal anxiety and stress. annali di igiene. 2020, 32(6): 627-634. doi: http://dx.doi. org/10.7416/ai.2020.2384 (italy) the newborn individualized developmental care and assessment program (nidcap) is designed to empower the parents in comprehensively caring for their preterm baby after discharge from the hospital. the present research was intended to study the effects of nidcap follow-up on the stress and anxiety of the mothers. in this clinical trial, 20 mothers of preterm babies with the gestational age of 26 to 32 weeks were studied. nidcap was performed during the hospital stay and twice after discharge. the control group received routine care without nidcap. anxiety and stress of the mothers were assessed using the spielberger and cohen questionnaires. at baseline, there were no statistically significant differences between the experimental and the control groups. after the intervention, the average score of anxiety was significantly lower among mothers in the experimental group compared to the control group (p=0.009). nidcap also reduced the stress of the mothers in the experiment group (p=0.033). implementation of nidcap and its home follow-up was effective in reducing the stress and the anxiety of the mothers of preterm babies. implementation of nidcap for mothers of preterm babies is recommended to all hospitals of the country. lopez-maestro m, de la cruz j, perapoch-lopez j, gimenonavarro a, vazquez-roman s, alonso-diaz c, munozamat b, morales-betancourt c, soriano-ramos m, pallasalonso c. eight principles for newborn care in neonatal units: findings from a national survey. acta paediatrica. 2020, 9(7): 1361-1368. doi: 10.1111/apa.15121 a european expert group established eight ‘principles of care’ in 2018 that define neurodevelopmental and family-centred care. the implementation of each principle was assessed by a survey sent to level-iii spanish units. a principle was considered to be implemented if all answers to the principle-associated questions were positive. the response rate was 84.5% (65/77). no unit had implemented eight principles. principle 1 (free parental access) was implemented in 21.5% of the centres; principle 2 (psychological support) 40%; principle 3 (pain management) 7.7%; principle 4 (environmental influences) 29%; principle 5 (postural support) 84.6%; principle 6 (kangaroo-care) 67.7%; principle 7 (breastfeeding) 23% and principle 8 (sleep protection) in 46%. in units attending ≥50 very low birth weight (vlbw) infants, four or more principles had been implemented in 31% vs 13% <50 vlbw neonates (odds ratio 3.0 ci 95% 0.9-10.1, p .07). the principle with the highest implementation was related to newborn body positioning. pain management was the principle with lowest implementation. more principles for ifcdc tend to be implemented in units providing care for a higher number of vlbw infants. welch mg, barone j, porges s, hane a, kwon k, ludwig rj, stark ri, surman al, myers mm, kolacz j. family nurture intervention in the nicu increases autonomic regulation in mothers and children at 4-5 years of age: follow-up results from a randomized controlled trial. plos one 2020, 15 (8):e0236930. doi:10.1371/journal.pone.0236930 a subset of infants and mothers (48% of infants, 51% of mothers) randomly assigned to either standard (sc), or sc plus family nurture intervention (fni) in the nicu in a prior randomized control trial (rct) (clincaltrials.gov; 2020. nct01439269) returned for follow-up assessments when the http://dx.doi.org/10.22038/ijn.2020.42355.1703 http://dx.doi.org/10.22038/ijn.2020.46116.1774 http://dx.doi.org/10.7416/ai.2020.2384 http://dx.doi.org/10.7416/ai.2020.2384 developmental observer • 2021 • 23 children were 4 to 5 years corrected age (ca). both children and mothers in the fni group had significantly greater levels of rsa compared to the sc group (child: mean difference = 0.60, 95% ci 0.17 to 1.03, p = 0.008; mother: mean difference = 0.64, 95% ci 0.07 to 1.21, p = 0.031). in addition, rsa increased more rapidly in fni children between infancy and the 4 to 5-year follow-up time point (sc = +3.11±0.16 loge msec2, +3.67±0.19 loge msec2 for fni, p<0.05). these results show that the rate of increase in rsa from infancy to childhood is more rapid in fni subjects. although these preliminary followup results are based on approximately half of the subjects originally enrolled in the rct, they suggest that fni-nicu led to healthier autonomic regulation in both mother and child, when measured during a brief face-to-face socioemotional interaction. a pavlovian autonomic co-conditioning mechanism may underly these findings that can be exploited therapeutically. 2021 aita m, de clifford faugere g, lavallee a, feeley n, stremler r, rioux e, proulx mh. effectiveness of interventions on early neurodevelopment of preterm infants: a systematic review and meta-analysis. bmc pediatrics. 21(1):210, 2021 04 29. doi: 10.1186/s12887-021-02559-6 findings of 12 studies involving 901 preterm infants were synthesized. three studies were combined in a meta-analysis showing that compared to standard care, the nidcap intervention is effective in improving preterm infants' neurobehavioral and neurological development at two weeks corrected age (ca). two other studies were combined in a meta-analysis indicating that parental participation did not significantly improve preterm infants' neurobehavioral development during nicu hospitalization. for all other interventions (i.e., developmental care, sensory stimulation, music and physical therapy), the synthesis of results shows that compared to standard care or other types of comparators, the effectiveness was either controversial or partially effective. the overall quality of evidence was rated low to very low. future studies are needed to identify interventions that are the most effective in promoting preterm infants' early neurodevelopment during nicu hospitalization or close to term age. interventions should be appropriately designed to allow comparison with previous studies and a combination of different instruments could provide a more global assessment of preterm infants' neurodevelopment and thus allow for comparisons across studies.= artese c, paterlini g, mascheroni e, montirosso r, developmental care study group (dcsg) of the italian neonatology society: cavicchioli p, bertoncelli n, chiandotto v, strola p, simeone n, calciolari g, ferrari f. barriers and facilitators to conducting kangaroo mother care in italian neonatal intensive care units. journal of pediatric nursing. 2021, 57: e68-e73. doi 10.1016/j. pedn.2020.10.028 a survey design was conducted in 86 newborn intensive care units to determine both obstacles and supports to implementation of kangaroo mother care (kmc). the survey investigated three main specific areas including: a) unit's characteristics; b) unit's policies toward parents; c) unit's kmc practice and policies. eighty-one nicus provided kmc. these 81 nicus had less restrictive parental access policies (chi2 = 7.373, p = .007). more than 70% of the units did not have adequate facilities for parents. kmc daily length was positively predicted (r2 = 0.18, f = 7.91, p = .001) by repeated sessions and documentation of kmc. the implementation of kmc is characterized by different barriers and facilitators that determine the parent's possibility to provide kmc. structural factors (e.g., adequate space and facilities) can support families in providing kmc. a unique result of this survey is that kmc documentation in medical records appears critical for improving its practice. although most of the italian units provide kmc as a routine practice, improving its practical support would be beneficial to its implementation. a more formalized approach to kmc may strengthen staff habits to consider kmc as a standard care treatment. chandebois l, nogue e, bouschbacher c, durand s, masson f, mesnage r, nagot n, cambonie g. dissemination of newborn behavior observation skills after newborn individualized developmental care and assessment program (nidcap) implementation. nursing open. 2021. doi: http://dx.doi.org/10.1002/nop2.904 to assess nurses' ability to observe newborn behavior after in situ training provided by caregivers with advanced practice certification in the newborn individualized developmental care and assessment program (nidcap). twelve nurses viewed 20-min films showing the behavior of 10 premature newborns before, during and after the usual caregiving. the behavior was rated on an observation sheet with 88 items distributed into six systems. the responses were compared to the reference ratings established by two professionals certified for this program. despite less accurate observations during care and for some components, the nurses generally showed a satisfactory ability to observe newborn behavior after training by nidcap expert professionals. the dissemination of observation skills among caregivers may result in an improved quality of patient care and better communication among professionals in a department of neonatology. epstein s. bauer s. stern ol. preterm infants with severe brain injury demonstrate unstable physiological responses during maternal singing with music therapy: a randomized controlled study. european journal of pediatrics, 2021, 180, (5): 1403-1412. doi:10.1007/s00431-020-03890-3 in this prospective, randomized intervention, 35 preterm infants with severe brain injury who underwent skin-to-skin contact (ssc) with or without maternal singing during music therapy (mt) were evaluated for physiological responses, including autonomic nervous system stability (low frequency (lf)/high frequency (hf) power), heart rate, respiratory rate, oxygen saturation, and behavioral state. higher mean +/standard deviation http://dx.doi.org/10.1002/nop2.904 24 • 2021 • developmental observer (sd) lf/hf ratio (1.8 +/0.7 vs. 1.1 +/0.25, p = 0.01), higher mean +/sd heart rate (145 +/15 vs. 132 +/12 beats per minute, p = 0.04), higher median (interquartile range) +infant behavioral state (nidcap manual for naturalistic observation and the brazelton neonatal behavioral assessment) score (3 (2-5) vs. 1 (1-3), p = 0.03), and higher mean +/sd maternal anxiety (state-trait anxiety inventory) score (39.1 +/10.4 vs. 31.5 +/7.3, p = 0.04) were documented in ssc combined with maternal singing during mt, as compared to ssc alone. a unique mt intervention should be designed for preterm infants with severe brain injury and their mothers. griffiths n, james-nunez k, spence k. crowle c, pettigrew j, loughran-fowlds a, samra ha. the evolution of an interdisciplinary developmental round in a surgical neonatal intensive care unit. advances in neonatal care. 2021, 21 (1) (pp e2-e10). doi: http://dx.doi.org/10.1097/ anc.0000000000000741 a retrospective audit of developmental round key performance criteria undertaken over a 4-year period (2015-2018). more than 300 developmental consults and 2000 individualized developmental recommendations occurred annually. parental presence during the developmental round increased by 10%, from 48% to 58%, during the audit period. literature has supported the use of developmental round interventions; however, minimal data have been reported to date. this article provides retrospective audit data of a developmental round intervention in the snicu with a focus on data over four years to highlight key areas, including the structure and process, recommended educational standards for team members, and parental engagement, as key markers for developmental round efficacy. future research should focus on the link between the developmental round intervention and long-term neonatal outcomes. herrera s, pierrat v, kaminski m, benhammou v, bonnet al, ancel py, germa a. factors associated with non-nutritive sucking habits at 2 years of age among very preterm children: epipage-2 cohort study. paediatric and perinatal epidemiology. 2021, 35(2):217-226. doi 10.1111/ ppe.12725 the study was based on data from epipage-2, a french national prospective cohort study of preterm births during 2011 that included 2593 children born between 24 & 31 weeks’ gestation. the frequency of non-nutritive sucking habits (nnshs) at 2 years was 69% in the overall sample, but higher among girls (adjusted risk ratio [rr] 1.12, 95% confidence interval [ci] 1.05, 1.17), children born from multiple pregnancies (rr 1.07, 95% ci 1.00, 1.11), children who were fed by nasogastric tube (rr 1.07, 95% ci 1.01, 1.13), or those who benefitted from developmental care programs (rr 1.10, 95% ci 1.02, 1.19). the nnshs frequency was lower if mothers were not born in france (rr 0.70, 95% ci 0.64, 0.77), children had 2 or more older siblings (rr 0.88, 95% ci 0.82, 0.96), or children were breast-fed at discharge (rr 0.90, 95% ci 0.85, 0.95). nnshs at 2 years seemed associated with cultural background, development care programs, and breast feeding. whether nnshs at 2 years among very preterm children are associated with future maxillofacial growth anomalies deserves further attention. litmanovitz i. silberstein d, butler s, vittner d. care of hospitalized infants and their families during the covid-19 pandemic: an international survey. journal of perinatology. 2021, 41(5): 981-987. doi:10.1038/s41372021-00960-8 this research explored changes in family-centered care practices for hospitalized infants and families due to the covid-19 pandemic. this exploratory descriptive study used a 49-item online survey, distributed to health care professionals working with hospitalized infants and families. the sample consisted of 96 participants from 22 countries. prior to the covid-19 pandemic, 87% of units welcomed families and 92% encouraged skin-toskin care. during the pandemic, family presence was restricted in 83% of units, while participation in infant care was restricted in 32%. medium-sized (20–40 beds) units applied less restriction than small (<20 beds) units (p = 0.03). units with single-family rooms that did not restrict parental presence, implemented fewer restrictions regarding parents’ active participation in care (p = 0.02). restrictions to families were not affected by geographic infection rates or developmental care education of health care professionals. restrictions during the pandemic increased separation between the infant and family. levesque v, johnson k, mckenzie amy, nykipilo a, taylor b, joynt c. implementing a skin-to-skin care and parent touch initiative in a tertiary cardiac and surgical neonatal intensive care unit. advances in neonatal care. 2021, 21(2):e24-e34. doi 10.1097/anc.0000000000000770 the purpose of this quality improvement project was to increase skin-to-skin care (ssc), parental holds, and parent touch events for infants in our cardiac and surgical neonatal intensive care unit. when traditional ssc was not possible, alternative holds and alternative parent touch (apt) methods were encouraged. implementation included educational tools and resource development, simulations, peer champions, in-class teaching, and team huddles. decisions around the type of hold and parent touch were fluid and reflected complex infant, family, staff, and physical space needs. given its initial scarcity, there was an increased frequency of ssc and variety of holds or apt events. skin-to-skin care, holds, and apt practices are feasible and safe for term and preterm infants receiving highly instrumented and complex cardiac and surgical care. future research regarding the intervention's impact on neurodevelopmental outcomes of infants and on parent resilience in the surgical and cardiac neonatal intensive care unit is warranted. http://dx.doi.org/10.1097/anc.0000000000000741 http://dx.doi.org/10.1097/anc.0000000000000741 developmental observer • 2021 • 25 menke b, hass j, diener c, pöschl j. family-centered music therapy—empowering premature infants and their primary caregivers through music: results of a pilot study. plos one. 2021, 16(5): e0250071. doi:10.1371/journal. pone.0250071 the aim of this pilot rct was to determine the influence of interactive live-improvised music therapy interventions on both the physiological development of premature infants and stress factors in both mothers and fathers. a total of 50 parent-infant pairs were analyze for their physiological development at discharge 47 mothers and 30 fathers completed the questionnaires on parental stress factors. the results suggests that a live-improvised interactive music therapy intervention for preterm infants and their parents has a beneficial effect on the therapy duration before discharge from hospital. group comparisons showed a significant reduction in the duration of caffeine therapy, the duration of nasogastric/orogastric tube feeding, and the length of hospitalization in the group of infants receiving music therapy. the results show fathers experience the same level of stress as mothers of premature infants. interestingly, the anxiety levels reported by fathers are lower compared to these reported by mothers. the results suggest that music therapy interventions may directly empower the parents by reducing their stress levels, promoting relaxation and enhancing their well-being. at time of discharge from the hospital, mothers of the treatment group showed a statistically significant reduction in stress, anxiety and postpartum depression. at the same time, they showed an increase in their maternal competencies. fathers of the treatment group also showed a statistically significant reduction in stress and state anxiety. several limitations were identified. vitale fm, chirico g, lentini c. sensory stimulation in the nicu environment: devices, systems, and procedures to protect and stimulate premature babies. children. 2021, 8 (5): 334. doi:10.3390/children8050334 the purpose of this review was to investigate the effects of nicu noise pollution on preterm infants and parents. the authors focused on the systems and projects used to control and modulate sounds, as well as on those special devices and innovative systems used to deliver maternal sounds and vibrations to this population. the results showed beneficial effects on the preterm infants in different areas such as physiological, autonomic, and neurobehavioral development. although most of these studies highlight positive reactions, there is also a general acknowledgement of the current limitation: small and heterogeneous groups, lack of structured variable measurements, systematic control groups, longitudinal studies, and normative values. the mother’s presence is always preferred, but the use of music therapy and the devices analyzed, aim to soften her absence (not replace her presence), through familiar and protective stimuli, which was a very powerful aid during the covid-19 pandemic. kato y, takemoto a, oumi c, hisaichi t, shimaji y, takaoka m, moriyama h, hirata k, wada k. effects of skin-toskin care on electrical activity of the diaphragm in preterm infants during neurally adjusted ventilatory assist. early human development, 2021, 157, https://doi.org/10.1016/j. earlhumdev.2021.105379 this study aimed to evaluate the effect of skin to skin care (ssc) on electrical activity of the diaphragm (edi) and vital signs in premature infants who are intubated and under neurally adjusted ventilatory assist ventilation. this was an observational cross-over study. data were measured in three periods: before (pressc period), during (ssc period), and after (post-ssc period) ssc. stable 30-min data in each period were extracted. thirty-four ssc procedures were performed in 14 preterm infants with a median gestational age of 25.3 weeks (interquartile range, 24, 26.4) and a birth weight of 659 g (566, 694). the median postnatal age was 41 days (31, 53) at the study with a median postmenstrual age of 31.3 weeks (30.4, 32.5). median values of edi peak, edi minimum, respiratory rate, spo2, and heart rate were measured in each condition. the kruskal–wallis test with bonferroni multiple comparisons was used to compare each parameter in each period. median edi peak and edi minimum values were significantly lower during ssc compared with preand post-ssc, without any change in respiratory rate, spo2, or heart rate. the conclusion was that respiratory efforts as evaluated by edi are significantly reduced during ssc in ventilated preterm infants. castro dias c, costa r, miguel pinto t, figueiredo b. the infant behavior questionnaire – revised: psychometric properties at 2 weeks, 3, 6 and 12 months of life. early human development, 2021, 153. https://doi.org/10.1016/j. earlhumdev.2020.105290 temperament characteristics are key elements for infants’ development. the infant behavior questionnaire – revised (ibqr) is one of the most used measures to assess temperament in infants aged between 3 and 12 months. its reliability and factor structure have not yet been examined in infants younger than 3 months. the aim was to analyze the reliability of the ibq-r at 2 weeks and the ibq-r factor structure from 2 weeks to 12 months of life. a longitudinal repeated measures design was used. three hundred mothers completed the ibq-r when their infants were 2 weeks, and 3, 6 and 12 months. at 2 weeks the proportion of “non-applicable” responses was higher in duration of orienting, high intensity pleasure, approach and smiling and laughter scales. the cronbach’s alpha for the ibq-r dimensions ranged between 0.62 and 0.63 and the mcdonald’s omega ranged between 0.67 and 0.80, all dimensions exhibited a meanscale correlation above 0.15, and more than half of the scales revealed a scale-dimension correlation higher than 0.30. the same factor structure was found at 2 weeks, and at 3, 6, and 12 months. the ibq-r may be applied in the first weeks of life and its factor structure remains stable when applied across different ages throughout infancy. https://doi.org/10.1016/j.earlhumdev.2021.105379 https://doi.org/10.1016/j.earlhumdev.2021.105379 https://doi.org/10.1016/j.earlhumdev.2020.105290 https://doi.org/10.1016/j.earlhumdev.2020.105290 26 • 2021 • developmental observer developmental observer the official newsletter of the nidcap® federation international developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ the nidcap federation international has reached 20 years and we all look forward to the celebrations at this years nidcap trainers meeting. in this issue we highlight the work of the various committees within the nfi. i encourage you, the members to get involved as your organization is only as strong as the membership’s contributions. in this issue eleni gerassis shows us how the impact of having a sick baby proved to be a catalyst for her amazing ongoing support for the current families as she celebrates her daughter’s 13 years. we can learn so much from the families and how they cope with the trauma of an early birth. we are challenged to improve our practice. inge van herreweghe and delphine druart in belgium share their efforts to improve feeding practices for small babies. from her science desk ita litmanovitz challenges us about technology and its impact on the babies and families. the profile of chui training centre takes you through a nidcap report to give an update on their amazing work. we travel to south africa to hear about one woman’s extraordinary work to ensure developmental care has an impact – congratulations welma lubbe. the facebook pages of many of the training centers highlight nidcap. if your center has a fb page please let me know so i can profile your work. the number of publications relevant to nidcap is increasing – a small sample is included in this issue. enjoy the issue and please let me know what you liked and what you would like to see more of in future issues. kaye spence am senior editor – developmental observer adjunct associate professor/ clinical nurse consultant, australasian nidcap training centre/ sydney children’s hospitals network / western sydney university/australia 2021 vol. 14 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “the best time to plant a tree was 20 years ago. the second-best time is now.” chinese proverb table of contentseditorial ...................................................... 1 the nfi celebrates 20 years ..................... 2 evolution of national guidelines ............ 4 family voices ............................................ 8 global perspectives ............................... 10 nidcap training centers around the world ........................................................ 14 the science desk .................................. 18 publications ............................................ 21 nidcap on the web ................................ 27 issn: 2689-2650 (online) do 14:2 full issue doi: 110.14434/do.v14i2.32997 nidcap care in the moment used with permission calming supportive hands greetings from the editor nfi celebrating20years! read about our history and becoming a member on p.2. nidcap federation international board of directors and staff 2020–2021 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com maria lopez maestro, md, phd nidcap trainer hospital universitario 12 de octubre nidcap training center email: mariamaestro@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu issn: 2689-2650 (online) all published items have a unique document identifier (doi) developmental observer • 2021 • 27 nidcap on the web the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap training centers – facebook pages during the past six months, despite the adversity facing the nidcap training centers and nidcap professionals worldwide, many positive achievements have taken place. this series of snapshots from the various training centers enable us to all celebrate and acknowledge each other’s achievements. follow us on all of our social media platforms: like us on facebook follow our posts on instagram watch our videos on you tube connect with colleagues on linkedin read and participate on our nidcap blog follow us on twitter http://nidcap.org/blog/ sandra.kosta@nidcap.org https://www.facebook.com/nidcapkarolinska https://www.facebook.com/nidcapaustralia https://www.facebook.com/nidcapporto.s.joao https://www.facebook.com/events/1601980809995189?ref=newsfeed https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international https://www.facebook.com/nidcap https://www.pinterest.com/nidcap/ https://www.youtube.com/user/nidcapfi https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international http://nidcap.org/blog/ http://nidcap.org/blog/ https://twitter.com/nidcap https://www.facebook.com/nidcap-france-224651964347914 https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829 www.nidcap.org become a member of the nfi the nfi invites you to join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org nidcap training centers americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james helm, phd email: jimhelm27@gmail.com nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, mn contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: majken grund nielsen, rn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail.com rimini nidcap training center ausl romagna, infermi hospital rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: gillian kennedy, obe, msc email: gillian.kennedy4@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il in july 2013, the nidcap federation international (nfi) certified the newborn intensive care unit (nicu) at meir medical center in kfar saba, israel, the first of its kind in the entire middle east. this recognition is certainly the culmination of a gradual process and a very special reward for our nursery’s never ending willingness to keep moving forward, by reviewing and evaluating our practice and caregiving, that will ultimately improve the care that we offer to infants and their families. the certification afforded the nursery, in turn, a renewed opportunity to envision and plan its next steps towards the promotion of a family-centered, individualized, developmental approach to preterm infant care. the nursery’s nidcap nursery certification was celebrated by means of a national professional conference entitled “witnessing new beginnings,” held at the meir medical center in december, 2013. some 200 caregivers, representing a variety of professions across the country including nurses, neonatologists, therapists, psychologists and nutritionists, as well as families, participated in this event. professor heidelise als, representing the nfi, honored the meeting with her presence and inspired the audience with her lecture about the crucial role of the family during the infant’s stay in the nicu. professor als sensitively and convincingly emphasized the uniqueness of the emerging parent-infant relationship as it unfolds in the complex environment of the nicu, and the influences this bond exerts – both in an overt and hidden fashion on the parent, infant and staff. in addition, the meaningful long-term effects of skin-to-skin care on children’s physiological organization, behavioral control, and the mother-infant relationship across the first 10 years of life, were fascinatingly presented by professor ruth feldman from bar ilan university. other topics that were addressed during this conference included: 1) challenges and strengths for organizational change in a reality of restrictive staffing conditions; 2) reflections and insights from a mother’s nicu diary; 3) enhancement of collaboration with families by means of multidisciplinary rounds with parents; and 4) the vision and trajectory of meir’s nicu in nidcap-based developmental care. this day of celebration culminated with an award ceremony, during which professor heidelise als depicted the joint efforts made by the nicu staff and the families over the years in a sustained trajectory towards an individualized, developmental model of care 2014 vol. 7 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international continued on page 2 table of contents on transformation and shining ................ 1 a foster mother’s story .......................... 3 wakemed nursery receives nfi-nidcap nursery certification award .................. 5 supporting families .................................. 7 nfi french chapter .................................. 9 nidcap profile ....................................... 10 family voices ........................................... 12 developmental resources .................... 16 reflections on “the early days” .......... 19 award recipients & achievements of nidcap professionals ...................... 21 nfi-nidcap nursery certification program (nncp) ..................................... 23 on transformation and shining dalia silberstein, rn, phd “the world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker.” hellen keller, 1908 the nfi-nidcap nursery certification award ceremony with shmuel arnon, md, ita litmanovitz, md, dalia silberstein, phd, kholood shabita, rn, heidelise als, phd, tzofia bauer, md, and tzipora dolfin, md 2 • 2014 • developmental observer guided by nidcap. the nidcap nursery award was enthusiastically received by the happy and proud nidcap nursery certification award staff. now, for a few moments, let us reflect beyond this special professional moment of achievement, recognition, and culmination for the whole nicu staff. let us ask ourselves: what was our nicu actually celebrating that very special day? we celebrated the honesty and humility that allowed us to say to ourselves that what we do, and how we care is still not good enough. we celebrated our shift form an all or none approach (“it is just not possible for us to achieve such high standards; we shouldn’t even gaze in that direction”), to a responsible, thoughtful, as good as we can approach (“we can still make many significant improvements in the way we deliver care for infants and families; we can certainly make a difference”). we celebrated the fact that it is possible to deliver sensitive, supportive, family-centered care, even if nursing staffing conditions are unacceptable by all current standards of care and are kept essentially unchanged over many years. we celebrated the enhancement of interdisciplinary collaboration and the promotion of a more fluent dialogue among professionals involved in the care of infants and their families. we celebrated being able to grasp the challenge of true collaborative work with parents, while expanding the scope of our joint projects. we celebrated our wisdom to look at what others do, and to learn from and get inspired by the way others conceptualize and deliver care. we celebrated the achievement of realistic organizational change in such a highly complex system as the nicu and the healthcare setting. interesting dynamics and mutual influences, which we did not experience before as an organization, took place: “a process of change that seemed to start in a bottom-up fashion (from staff to management), shifted at some point to a top-down direction (from management to staff), only to perpetuate these new currents of mutual influence and to potentiate its effects.” we celebrated as all infants do at the very beginning of life, being looked at and cared for by someone who really does care for the best outcomes. the certification process afforded a unique and seldom experienced opportunity to share and discuss our work with experienced and sensitive interlocutors, who were knowledgeable of the many facets, challenges and subtleties of preterm infant care. finally, we celebrated the freedom to dream, to have a vision, and to crystallize it in a plan. to grasp a broad concept, and to a semi-annual publication of the nidcap federation international © 2014. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer the multidisciplinary nicu team at meir medical center, receiving the nfi-nidcap nursery certification award from heidelise als, phd continued on page 24 developmental observer • 2014 • 3 juzer tyebkhan, md, neonatologist and nidcap trainer-in-training, edmonton, canada the following article was written by an experienced mother and foster mother who has looked after many infants that have been exposed to drugs and alcohol during pregnancy. she informed us soon after observing the nidcap observation day, and reading the resulting nidcap observation and care plan, that this experience had transformed her approach to caring for these infants. this foster mother continues to be involved with nidcap and our hospital in edmonton, as she presents her experience of caring for these infants at our hospital staff education days. she is also working with relevant agencies to ensure that all infants who may need foster care receive behaviorally sensitive care, including the provision of a consistent, familiar foster parent as early as possible. i have served as a foster parent for thirty years. for reasons that will be evident, i am writing this article anonymously. if i were to spell my name it could be followed by the initials baf, representing the experiences i count among the most significant of my lifetime: biological, adoptive and foster mom. on-thejob training for this career commenced 30 years ago and still offers endless “continuing education” opportunities. for the past two years, i have taken a break from serving as a foster parent, but finally ready to resume, i was waiting for the phone to ring. the main character in this story is “identity protected” so rather than use the name on her birth certificate, i will call her molly. molly is the second-born child of teen-aged parents entrenched in a high-risk lifestyle. she was a full-term infant but had a heart abnormality known as atrial septal defect (asd) and was now living in a hospital newborn intensive care unit (nicu). when she was two days old i received a phone call. it was a social worker asking if molly could be placed in our home upon discharge from the hospital, saying that it would likely be in a day or so. upon my arrival at the nicu, a nurse reported that molly had spent a long night of agonized screaming, along with other symptoms of drug withdrawal. she had been given morphine to help soothe her. she was lying quietly in her plexiglas bassinet. i will never forget how she looked. her mouth opened in a silent scream, her eyes were filled with fear, and her hands were tightly fisted at the ends of her rigidly clenched arms. somehow though, in that moment, my entire heart ended up firmly within her grasp. the next two weeks passed quickly with me traveling to the hospital each day and taking over molly’s care while i was there. though molly was not the first infant i had taken home from the nicu, she was the first one delegated to me more than 24 hours previous to discharge, so this was my lengthiest encounter with these impossibly tiny infants, complicated medical machinery and highly-specialized caregiver skills of the nicu world. molly appeared to be the least medically-fragile infant there, so i had the luxury of not being involved with life and death issues, but my questions were often met with conflicting information. how quickly should she be weaned from morphine? could she be discharged before that happened? if so, how would i finish the process? during my time with molly on the nicu, i really valued two nurses in the nursery, one who was the best at explaining things to me; and the other nurse who was the best at listening to me. the “listening nurse” was the one who strongly advocated for a discharge plan which addressed my concerns. though i didn’t by any means speak with everybody involved in molly’s care, i dealt with over a dozen nurses, four neonatologists, three pharmacists, two hospital social workers, a nurse practitioner and the nidcap team. molly’s last week in the hospital was quite eventful, and included: an opportunity to be the focus of a nidcap training session; more long screaming ordeals as her morphine was reduced; some additional medications; and for the last two days, she had me as her roommate in one of the family suites. molly was able to become more settled with the support of one caregiver in a quiet, dimly-lit room. though molly had stabilized nicely, the medical/nursing team decided not to reduce the morphine again until a week after she had transitioned home. i anticipated that venturing into the big world beyond the hospital would be difficult for molly so the day we left i shielded her visually with a blanket, but couldn’t prevent the bombardment of other first-time sensations (e.g., car seat restraints, movement of a stroller, elevator, the smell of the outdoors, being placed inside a vehicle, and the sound of traffic, etc.). about 20 minutes into our trip home, her behavior became chaotic and from then on her medication appeared to have little or no effect. the next two weeks were a very intense adjustment period. though we have a quiet household, molly became overwhelmed going from one room to another, and the smell of food cooking set off intense crying. because her caregiver (me) and the amount of morphine had not changed, i knew her environment was the variable and i thought of ways it could be a foster mother’s story: caring for an infant exposed to drugs and alcohol during pregnancy 4 • 2014 • developmental observer adapted to help her achieve the goals written on her nidcap observation. oddly, i remembered a friend once telling me they confined their traumatized pet cat to one room for the first few days after moving to a new home. i wondered if something like that would help molly. so in one of our bedrooms, i created a consistent, low-stimulus environment with dim lighting, a fan providing continuous background sound and i brought the care to her (e.g., bathing, diaper changes, and feeding). visits by the public health nurse and social workers all took place in her bedroom. molly would go 17 hours per day without sleeping for more than 10-15 minute intervals. if i laid her down, she would awake and begin crying immediately. so for the next two weeks i “camped out” with her in that one room. thanks to my husband, i ate mostly “room-service” meals during that time. fortunately every night molly was able to stay asleep for two to three hour stretches in her crib, so i didn’t become totally sleep-deprived. however, during the stress of those first weeks home i admit, once or twice, i used a bit of that rare off-duty time to do some “inconsolable crying” of my own. reading back over the charts that i made to record her medications, feeds, diaper changes, behaviors, and sleep states, i see a few notes on the side-day five: “had to lay her down in crib when she couldn’t stop screaming, walked away and took a break;” day six: “trying to stay calm but feel very emotional and trapped. i know it is five more hours of this before i can go to bed tonight for three hours;” day ten: “11:48 pm: i feel very discouraged like this is never going to end.” happily, the tone changed on day thirteen: “had the best evening since coming home from the hospital.” interestingly, there was a direct correlation between my despairing side-notes and molly’s trips to town. the most difficult days always followed an outing. after each trip to the doctor’s office, and as we returned home, molly would regress. she would, however, regain her pre-excursion state more quickly if we spent the following day or so back in her room. in an e-mail sent to molly’s social worker on the twenty-fifth day after coming home i said: “she is sleeping through the night consistently now which is wonderful for her (and for me) as she is still not sleeping at all during the day unless i am holding her, and even then only for a few minutes at a time. most days she is eating every two hours to make up for the feedings that she misses between eleven pm and six am. her pediatrician says because she is not sleeping as much as most babies her age, she is not gaining weight as quickly as normal, but her double chin is evidence that she is not wasting away.” the doctor had also noted, “molly doesn’t have that ‘crazy’ look in her eyes anymore and neither do you, for that matter,” but i didn’t include that in my notes to the worker! the nidcap caregiver’s observation sparked a different approach to some aspects of infant care than i had never previously thought of using. the nidcap recommendations in support of molly’s growth and development appeared to help molly settle and let me know that nidcap was a valuable tool for parenting fragile/traumatized babies. wanting to express my thanks to dr. juzer tyebkhan, his nidcap team and their trainer, dr. joy browne, i sent a follow-up email several months later. it read, in part: “i don’t know how often you get updates about the post-hospital experience of nicu ‘graduates’ and their caregivers but i thought i would send some feedback letting you know what nidcap has meant for molly, and for me. also, it is productive for me to summarize what i have learned, as it is my goal to continue pursuing opportunities that will add to my knowledge and experience. as you mentioned, much of what nidcap is based on seems like common-sense, but the recommendations in the material you shared provided me with new awareness that made all the difference during those difficult first weeks at home with molly. i learned that: 1. rather than attempting to become more skilled at calming her, my goal was to recognize and respond to her cues as she worked towards achieving better self-regulation. this enabled me to identify subtle indications that she was ‘not ready for activity.’ and coping with the not-so-subtle cues that she was in a ‘disorganized’ state...such as the periods of sleeplessness and inconsolable screaming, became less stressful for me once i stopped viewing it as my failure to calm her. the simple shift of redefining my role in ‘supporting her as she develops a skill’ made it so much easier to regulate my own emotions. 2. when she kicked outwards with her feet, rather than trying to get more space, what she was trying to do was to search for a secure boundary to push against. she settled more easily if there was always something solid for her to rest her feet against. also if i could gently guide her hands to her chest, clasping each other or my finger she would relax more readily. 3. the whole process of digestion was hard, complex work for her and the fewer distractions she had immediately before, during, and after her feeding times, the better. 4. in the initial adjustment period, after leaving the hospital, she would immediately react to over-stimulation. for example, during the hour-long drive from the hospital to our home i had to stop my car on the side of the road, take her out of the car seat and hold her until she could stop screaming. after a couple of weeks passed, she would exhibit less noticeable signs of distress at the time she was introduced to a new stimulus (such as extra visitors in the house) but the effects would manifest in a few hours or even the next day in the form of digestive upset (e.g., increased regurgitation, constipation or diarrhea and intestinal cramping), sometimes severe enough to again cause bouts of screaming and sleeplessness. when you asked if i was willing to take part in the nidcap observation i recognized it could be a valuable learning continued on page 24 developmental observer • 2014 • 5 wakemed’s neonatal intensive care unit (nicu) is officially a nidcap certified nursery. the nidcap nursery certification program (nncp), under the authority of the nidcap federation international (nfi), recognizes the excellent level of individualized, developmentally supportive, familycentered care a nursery provides its infants and their families, as well as the exceptional level of care and support for nursery staff. “i am extremely proud of our nicu team for achieving this elite recognition and for the remarkable level of care our staff continues to provide to infants and families,” commented jim helm, phd, director of wakemed’s carolina nidcap training center. the nidcap approach to developmentally supportive and family-centered care has been shown to greatly benefit infants and their families living in the nursery, both during the hospital stay and beyond. for 25 years, the wakemed nicu has been a national leader in this approach, being one of ten nidcap training centers in the country. over the last two years, the nicu implemented more than 12 initiatives to enhance this work including: a new emphasis on kangaroo care (parents holding babies skin-to-skin), cuebased feeding, four-handed care assist from volunteers, bedside developmental guidelines for families, swaddle baths, and more requests for families to be on unit committees. in late september, 2012, the wakemed nicu was notified that it was officially the fourth hospital in the world to receive nidcap nursery certification. “i congratulate the whole team on this impressive honor and especially thank all of the nursing staff who work hard to ensure the highest level of care for our tiniest patients,” added cindy boily, rn, senior vice president and chief nursing officer. “we commend you for the invaluable work that you do.” in june 2013, wakemed sponsored a celebration featuring heidelise als, phd who presented supporting research for the nidcap approach. she presented at pediatric grand rounds; a wakemed families first event (“what parents of pre mature babies need to know”); and a special seminar for nicu nurses (“the nurse’s role in supporting early brain development in the nicu”). this article was adapted from: wakemed newsletter, “microscope,” news for employees and friends of wakemed, november, 2012. photos wakemed employees and scarborough photos. wakemed nursery receives nfi-nidcap nursery certification award jim helm, phd; heidelise als, phd; melissa johnson, phd; marie reilly, pt, phd; ann marie elmore, ms, pt members of the newborn intensive care unit (nicu) and neonatology teams with the nfi-nnc award (left to right): anthony tackman, md; tara bastek, md, mph; melissa johnson, phd; susan gutierrez, bsn, rnc-nic; jim helm, phd; stephen parsons, md, phd; james perciaccante, md; jodi dejoseph, bsn, rnc-nic; and thomas young, md 6 • 2014 • developmental observer wakemed adds private rooms for the care of premature infants and their families nidcap care in the moment learning to recognize the infant’s voice and opportunities for support twelve premature infants at wakemed moved into their own private rooms as the hospital’s renovated neonatal intensive care unit opened on february 20, 2014. the new newborn intensive care unit (nicu) space adds 12,000 square feet and 12 beds, for a total of 21,000 square feet and 48 beds. most notably, the eight million dollar project adds 27 private rooms, something almost unheard of in such a unit. these new rooms have a recliner, a sofa that extends for sleeping, a refrigerator for breast milk, and artwork on the walls. parents will have considerably more personal space to freely move about. they can close the door to their room to ensure privacy and quiet time with their infant as they cherish and nurture their baby along his/her developmental trajectory. in addition, parents are supported to spend the night in the remaining weeks of their stay, before their infant is strong enough to go home. jim helm, phd, infant developmental specialist said that, “the hospital prides itself on individualized care for all patients, including preemies. doctors watch each baby’s reaction to stimuli and change care accordingly. if you’re sensitive to those individual differences, you can be more supportive. we hope the new rooms add to our ability to enhance the experience of families and babies. more privacy, more individually controlled environments. it’s all about the baby.” read more here: http://www.newsobserver. com/2014/02/20/3640299/wakemeds-new-area-forpremature.html#storylink=cpy this section was adapted from samantha gilman’s article entitled “wakemed’s new area for premature babies includes private rooms,” in newsobserver.com, february 20, 2014. developmental observer • 2014 • 7 lenora hendson, mb bch, msc, frcp© s u p p o r t i n g fa m i l i e s culturally competent care in the newborn intensive care unit: supporting “fragile interactions” leonora hendson, mb bch, msc, frcp(c) is a neonatologist and associate clinical professor in the department of pediatrics at the university of calgary in alberta, canada. she completed her neonatology fellowship in edmonton, alberta, where she was actively involved in the edmonton nidcap study. in addition to her work on family support and cultural competence, she has published on the medical outcomes of infants enrolled in the edmonton nidcap study. melissa johnson, phd the newborn intensive care unit (nicu) is unique in the varying levels of acuity, the circumstances surrounding birth, death, parent bonding, and often, the lengthy stay of an infant. integrated within care delivery, the philosophy of family centered care specifically honors racial, ethnic, cultural and socio-economic diversity. in the last several decades, there has been increased immigration worldwide. immigration is a determinant of health potentially imposing detrimental effects on wellbeing. ethnic minorities and immigrant communities may experience poorer health related to inequities in opportunity and resources, and barriers to access services in healthcare. immigrant women are at higher risk of preterm birth and having infants of low birth weight. children of immigrant mothers may have more challenges with development.1 what is culture and culturally competent care? culture is defined as a set of values, beliefs, and norms that provide a sense of identity and guide the thinking and decision making of a group. culture exists at the level of the individual as well as the organization and community. culture is not simply defined by race, ethnicity, country of origin, or religion. other characteristics such as age, gender, socioeconomic status, sexual orientation, life experience, acculturation, and assimilation, influence an individual’s culture. as such, the culture of the family as well as that of the healthcare provider is important for health and healthcare delivery. cultural competence in healthcare tailors delivery to meet patients’ social, cultural, and linguistic needs. culturally competent care considers how these factors may interact to compromise access to quality healthcare. cultural competence is thus a requisite skill for all healthcare providers. this requires a commitment from individual healthcare providers and organizations to venture on a developmental process of becoming culturally competent that involves awareness and sensitivity, knowledge and skill, and desire and experience. many of the strategies for family centered care are applicable when providing culturally competent care, however they may take on exaggerated importance when providing cross cultural care. our experience in the nicu: what are healthcare providers’ perspectives? dr. david nicholas (phd, sw, university of calgary), misty reis (np, alberta health services) and i conducted a qualitative study using grounded theory methodology to explore the experiences of healthcare providers when providing care to recently immigrated families whose child was admitted to the nicu. we used interdisciplinary focus group interviews to collect data as the conversational depth during these interviews reflected the team-based approach in the nicu. interviews were completed at two tertiary level nicus in edmonton, alberta, canada. there were 58 participants, 80% of whom were canadian born, congruent with the current statistic of one in five canadians being foreign born. our study elucidated the nature of “fragile interactions” experienced by healthcare providers when treating new immigrant families in the nicu. our theme was highlighted by the following: “it (cross cultural issues) just happens to be one more piece or burden which makes a fragile interaction worse or even makes a normal interaction fragile.” we defined fragile interactions as supporting culturally competent care in the nicu 8 • 2014 • developmental observer the reciprocal relationship between healthcare provider and the family that was influenced by multiple factors including the infant’s medical status and the perceived importance of cultural or religious practices and philosophies for the family. healthcare providers described how the fragility of interactions was amplified particularly around the family’s decisionmaking process, differing expectations for survival, language and communication. healthcare providers identified their own challenges providing cross cultural care around unintentional stereotyping, time constraints to carry out intangible activities, and lack of intuitive perceptions of new immigrant families’ needs. challenges related to family factors healthcare providers described dissonance when caring for newly immigrated families around who should be making decisions and how decisions are made. the individualistic western tradition expects parents to play an active role in decision making. alternatively, when families rely on collectivistic beliefs or advisors to make decisions, healthcare providers described a sense of unease. this was exacerbated in situations where continued intensive care was thought to be futile for the infant as illustrated by the following example: “we have had a few families where we have almost felt like things were futile to carry on, but the community support said “no,” that they [the family] had to carry on at all costs, and that made caring for this person quite difficult because you were doing something that you did not feel was right.” healthcare providers described the difficulties newly immigrated families appear to have with expectations for survival, especially for extremely premature infants. in these instances newly immigrated families expect to lose their infant, and have to readjust to not only the survival of their infant, but potentially long term complications for their child, illustrated by this quote: “i had one family who said, “you know, in our home, babies born before this gestation just die.” she was terrified to even come up and see the baby because this baby was really not supposed to be alive. it took her weeks and weeks to really work through that.” participants emphasized the impact of language and communication as a barrier to care, negatively affecting the efficiency of decision-making and daily care. even with the use of translators, interpreting the words and understanding the message in emotionally charged situations was often described as delicate and extremely poignant, exemplified by this quote: “the dad’s english was very good, he taught at the university and the neonatologist said ‘his english is fantastic, he understood everything.’ i think his first language was french. i was on call and that is when he asked me if the baby was dying, and it was not that he did not have the english words for it. it was that he just could not ask in english, he had to ask in french.” challenges related to staff practices healthcare providers described an attitudinal shift amongst staff as ‘stereotyping’ and at times felt that they were ‘writing off’ a family, in that staff were no longer trying to understand the cultural or situational circumstances of the newly immigrated family. this was passed on from person to person, shift to shift as illustrated by this quote: “we don’t see them as individuals anymore. we have already given them a certain way of behaving. if they did it a little bit, they are all the way there. if they did not come in once, then they never come in. we need to be careful about that and start treating the families as individuals.” healthcare providers conveyed feeling caught between the tasks required in a nicu versus taking the time to forge relationships and effectively work with families. whether it is due to language barriers or cultural differences, the time required to work with newly immigrated families was reported to be longer to teach families about the care of their infant. nurses most commonly expressed that their efforts were undervalued in nicu organizational structures, and yet crucial to the care provided: “you are doing intangibles, something that is not measurable. you are talking, you are reassuring, you are helping, you are supporting, but you are not doing (with emphasis) anything.” the ability to be perceptive to diverse cultural norms such as modesty, privacy, eye contact, and touch was described as having a significant influence on the healthcare provider’s ability to engage new immigrant families. healthcare providers reported that these are important aspects to convey respect and dignity, illustrated by this quote: “whether or not mom is comfortable being in the curtain pumping while people are coming and walking through and/ or kangaroo caring with a bare chest and whether or not dad is comfortable with mom doing that. there are probably rules about that and so, if we do not know what they are, it is hard for us to be sensitive to them.” supporting fragile interactions healthcare providers from our study identified mitigating factors supportive of cross cultural care including seeking to understand the new immigrant family’s perspective, requesting additional education, and building collaborative relationships. healthcare providers described actively supporting the newborn and the new immigrant family in various ways including asking families what they required, educating parents, and seeking to exhibit a non-judgmental attitude. they described advocating for services within the community such as access to multicultural healthcare brokers, immigration issues, and funding. they described the importance of stepping back, being humble, and listening to families’ perspectives. one healthcare provider gave the following advice: “find out what is important for that family. every family is developmental observer • 2014 • 9 unique and every culture is unique and if we don’t know, we need to ask the question: ‘how do you need this to be for your family right now?’” healthcare providers desired education about other cultures and religions as a starting point to care for newly immigrated families. education could be in the form of orientation, inservices, a manual of cultures, discussion following encounters with families, or graduate families returning to the nicu to educate staff on their cultural needs. at the same time, healthcare providers realized that families are all unique and that people differ in their adherence to cultural norms, hence care needs to be individualized. healthcare providers nonetheless described the potential benefit of having a baseline knowledge that could be refined according to the individual and family. overall, healthcare providers exemplified this balance as follows: “it’s respect and empathy and the fact that you educate yourself about different cultures so that you can be culturally sensitive.” healthcare providers were reflective about the stress of the families in the nicu and the emotional roller coaster experienced by the families. regardless of the cultural background of the families, healthcare providers described how important it was to form genuine relationships, to be respectful of all individuals, and to empower parents. one healthcare provider reflected: developmental observer (do): why did you start the process of creating an nfi chapter? jacques sizun (sj): nidcap is now a worldwide program. the nfi plays an important role by: supporting nidcap implementation, assuring the quality of training and education, and disseminating research data. the nfi is an international organization with 19 nidcap training centers and 209 nfi members representing 28 countries. the annual nidcap trainers meeting is a success and is held each year in either the usa or europe. the 24th meeting was held in 2013 in winston-salem, north carolina. this year it will be held in segovia, spain. unfortunately most french professionals and family members are not fluent in speaking and/or reading english. this limits access to high-quality updated information on nidcap such as: articles in the developmental observer, international and research articles in medical and nursing journals, and us conferences and meetings. moreover, fundraising activities are complex as each country has its own legal tax rules. soliciting funds from the french government to support a us-based organization is not easy. however, interest in nidcap is growing in europe and specifically in france. seventeen french hospitals, mainly university hospitals, have nidcap certified professionals and/or trainees. in most of these hospitals, at least one neonatalogist is nidcap certified or involved in nidcap training. creating a french structure to coordinate all these activities, under the nfi umbrella, appeared to be a necessary step. do: how is the french chapter organized? js: the french nfi chapter is a non-profit association according to the french law called “loi 1901”. the statutes have been submitted to and validated by the prefecture. the chapter board has seven members: jacques sizun (md), nathalie ratynski (md, nidcap trainer), sylvie minguy (rn, nidcap trainer), morgane dubourg (md), jean-dominique giroux (md), pierre kuhn (md) from strasbourg university hospital, véronique pierrat (md) from lille university hospital. this temporary board is in charge of creating the administrative structure and defining the main objectives of the chapter. a new board will be elected within one year in order to integrate more non-physician members from different regions in france. do: what are the objectives of the french chapter? js: the chapter has three main objectives including: 1) the integration of new professional and family members; one hundred members within one or two years is the goal; 2) offering high quality french-written information on nidcap, using social media and the internet; and 3) to develop fundraising activities in order to support translation, scientific meetings, and training of future frenchspeaking nncp site visitors. do: what is the relationship between the nfi and the chapter? js: the chapter has its own administrative organization due to french law. all future chapter members will be invited to join the nfi. all “current” chapter board members are nfi members. the chapter will send a scientific and financial report to the nfi each year. a short presentation of current “chapter” activities will be conducted each year during the nidcap trainers meeting. ensuring the quality of the nidcap training and education is the exclusive role of the nfi. nfi french chapter jacques sizun, md references on page 24 10 • 2014 • developmental observer maria maestro, md n i d c a p p r o f i l e fátima mandar is a nidcap professional, apib professional and future nidcap trainer of the barcelona-vall d´hebron nidcap training center, with whom i have been fortunate to work and share experiences. i have also been able to enjoy her friendship. fátima was born at 5:00 am on january 1, 1978 at the coruña maternity hospital (an early riser from the outset). when she was a little girl, she suffered from a disease from which she recovered, thanks to the wise and correct care of a pediatrician that her family still admires, respects and continues to feel sincere gratitude for. fátima’s subsequent vocation for medicine was doubtlessly fuelled by this illness, in addition to her mother’s example of care and commitment to others. from a very small age, fatima was very interested in sports, in particular swimming and football, which she still practices today by taking part in a women’s amateur football team. fátima is also passionate about reading and travelling. at the end of her adolescence, fátima had a difficult choice to make between her advanced studies in mathematics, physics and health sciences, to which she felt especially attracted. today, we are happy that she chose medicine, which she studied at the faculty of medicine of santiago de compostela university. once she finished her degree, she decided to pursue pediatrics. this decision was influenced by a gratifying experience of successfully treating a child, who required a doctor’s care when she was travelling. fátima decided to continue training professionally in pediatrics. fátima found her training in pediatrics and neonatology to be a most enriching experience. the practice of pediatrics and the practical way that dr. pep perapoch led the team in initiating developmentally focused care, altered her way of understanding how to care and treat children and their families. fátima fully identified with these theoretical principles and their practical application. in addition to her gratifying professional life, fátima was fortunate enough to meet antonio, her husband-to-be, on a galician language course in the summer of 2000. in antonio’s own words, “fátima is a tireless, reliable, committed worker who always sees things positively. she is a very good person with a heart of gold.” fátima’s initial contact with the nidcap approach to care was through graciela basso, md, her nidcap trainer. dr. basso had come to barcelona in 2005 to commence nidcap training with dr. pep perapoch and maría josé, a nurse from her team. during dr. basso’s stay in the val de hebrón hospital unit, fátima was able to familiarize herself with the principles on which nidcap is based and her personal affinity with this method. fátima wholeheartedly supported the nidcap work group in her hospital from the beginning and she began her own training the following year. she benefited from dr. basso’s knowledge, recommendations and advice, which she used in her care of children and their families in the nursery. dr. perapoch describes his relationship with fátima as one based on mutual admiration and respect. “in spite of her reserved nature and the generation gap, i feel that fátima is a person you can trust wholeheartedly, with whom one can share (and improve) all kinds of initiatives as well as concerns. i feel that she is a person you can always rely on.” fátima mandar, md the second iberian meeting celebrated in barcelona, spain in june 2013 developmental observer • 2014 • 11 fátima is currently preparing to become a nidcap trainer. she and her colleagues, estrella and juliana, have successfully passed the training in the assessment of preterm infants’ behavior (apib). personally, it was a pleasure for me to share in the administration of the apib examination of several infants with fátima. i must particularly highlight the way in which fátima interacted with the infants during the course of this assessment. she understands what an infant is trying to express via his/her behavioral language and how she can help the infant, through carefully graded co-regulation, give the best of him/herself. in performing nidcap fieldwork in spain the collaboration between the hospitals val de hebrón in barcelona and the doce de octubre in madrid is now a reality. a result of the collaboration between both of these spanish nidcap training centers led to the creation of the iberian work days that are aimed at spanish-speaking nidcap professionals. fátima was, and is one of the most important architects of this kind of meeting, which is increasingly becoming more successful. the second edition of this meeting, which took place in june, 2013 in barcelona, gathered together almost 50 people, and was attended by dr. graciela basso. with her work, fátima has managed to create an environment in which everyone feels welcome, achieving a climate of collaboration among those attending the work days, and always striving to convey the importance of the nidcap approach to care. her future challenge is continuing to uphold the same level of quality and ensuring that people who do not speak english have a place where they can reflect and grow. i can vouch for this myself because i am fortunate enough to work shoulder to shoulder with fátima in creating these work days. from this forum i would like to express my admiration for fátima’s human qualities and warmth, both as a neonatologist and as a nidcap professional. i am sure her goal to become a nidcap trainer will be realized in the near future. the children and their families are extremely lucky indeed to have fátima on their care team. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. nidcap nursery certification program (nncp) the nidcap nursery certification program (nncp) under the auspices of the nidcap federation international (nfi) recognizes the excellence of a hospital nursery’s commitment to and integration of the principles of the newborn individualized developmental care and assessment program (nidcap) for infants and their families. nidcap nursery certification is both a goal and a process. nurseries that apply for this certification will, by the process of the application and by their self evaluation, define the areas of their current strengths and areas for future growth. successful nidcap nursery certification represents distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, and as such is to be commended and celebrated as an inspiration for all. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd hedlund, med, nncp director at: nncpdirector@nidcap.org or 785-841-5440. 12 • 2014 • developmental observer chris linn fa m i ly v o i c e s one family’s journey the newborn intensive care unit (nicu) can be an intimidating place. for a family that is beginning the long journey through a hospitalization at this level, it can be exhausting as well as emotionally draining. an infant born extremely premature has complex needs and can require multiple services that involve substantial coordination and may extend an infant’s stay. patience and strength are critical for a family to navigate this environment and the specialized services that are needed following an infant’s discharge to home. in this powerful story, the linn family shares their experience and how their journey ultimately brought their family closer together and turned chris linn into a resource and strong advocate for others to follow. debra paul, otr i ’ll never forget march 15, 2003. it’s the day our dreams were shattered. it’s the day our lives changed forever. it’s the day we brought our 25-week twins into this world and began our journey of feelings we never knew were possible. friday, march 14, 2003: we were elated! the doctor just gave us a perfect checkup and actually cleared me to continue working because things were going so well. the twins were thriving, i was strong, and things couldn’t have been better. of course i was reminded we were in a critical window when, if things were to go wrong, things usually did around this gestational period. i was going to beat the odds! i went back to work and gave everyone the update. they were so excited to see me and had planned a baby shower for me on monday. saturday, march 15, 2003: i just finished shopping for my baby shower outfit. i was feeling an overwhelming sense of exhaustion. thank goodness i could go home and sleep all afternoon. i felt like i could sleep for hours. i stopped to use the restroom in the mall and i was spotting…okay try not to panic…i knew spotting can happen during pregnancy. i rushed home and yelled for my husband. as i got out of the car, blood was everywhere. we rushed to the hospital and my doctor met us there. the wonderful triage nurse prayed with me. the doctor said, “i’m sorry we need to take the babies and i don’t have time to air evac you to a facility equipped for acute care.” what does that mean? i’m in a hospital! will they have a chance? what is going on? i had a wonderful checkup…this can’t be happening. my husband is being asked to scrub up and i’m being rushed to the operating room. i remember asking the doctor, “what is the earliest gestational age a baby can survive?” he hesitated and then said, “honestly, 24-weeks is the earliest we see babies surviving.” i knew we had a chance because we were at 25-weeks and three days gestation. all of a sudden, i hear a small cry and they bring each baby to me for a quick kiss before they rush them to the nicu. we didn’t hear the lullaby over the loud speaker that we know is usually played when a baby is born. why aren’t they playing the lullaby? i feel empty…where are my babies? hours before i could feel some movement. they were a part of me. now my stomach is still and empty. i cannot stop crying. people are coming to see me and the phones are ringing. people don’t know what to say… do they congratulate us or cry with us? this isn’t the way it’s meant to be. i get to see my babies…baby a and baby b. their names are zachary and emilie. they have tubes and wires coming out of them from everywhere. they don’t even look like infants. how can this be possible? i feel tremendous guilt and start replaying my day…i shouldn’t have picked up that comforter…i shouldn’t have gone to the mall…i know if i would’ve just rested this wouldn’t have happened...it’s all my fault! the neonatologist tells me a placental abruption can happen in your sleep and there is nothing i could have done to cause this. what? a placental abruption? but i just had a perfect check up! i can see the pain in his eyes as he watches me suffering and beating myself up. please don’t let this be happening. my husband mark is in shock and so scared for both me and our babies. i drifted off while in triage and he thought i was dying. my poor husband. my mom is hurting for me, her sonin-law, and her brand new grandchildren. my poor mom. mark’s chris, emilie and mark’s smiling family portrait, july 2004 developmental observer • 2014 • 13 parents are devastated from a distance. they begin making immediate plans to figure out how to come be with us. everyone wants to stop by for a visit. i just can’t take the visitors right now…i just want to cry and be alone. it’s time for the “talk.” the neonatologist visits us in our room later that evening and begins telling us about statistics… this percentage and that percentage. our babies are sick; they may have learning disabilities; they may have cerebral palsy; they may not survive; they may need to be moved to a more critical care nursery, etc., etc., etc. please make it go away…i can’t hear this! i’m only allowed to stay three days in the hospital. the nice young man arrives at my room with the wheelchair to escort me out of the hospital and he wants to know where the baby is. i can’t talk, someone has to tell him that my babies are not coming home with me. i stare out the window as we drive home. i’m in disbelief…why can’t i stay with my babies? this wasn’t what i dreamed about. emilie needs to have heart surgery at three weeks old, and she needs to be transported to another hospital. the fear sets in and we can’t believe it. why now? why did we not know about this before? how can we split them up? another “talk,”…the number one risk is death. please don’t say that…we can’t take it. the day after the surgery, the neonatologist calls us because they need to talk to us about zach. zachary has downs syndrome. but at least he is going to live...we ask about all the things we hear about. does he have any heart defects? we are assured he doesn’t. we lay in bed the next day unable to function…how can this be happening? we feed our babies for the first time through a syringe into a feeding tube. my job is to produce the liquid gold. it’s the one thing i can do to contribute to their survival. i become obsessed with pumping and thank goodness i can be a part of their care. we begin kangaroo care (skin-to-skin-contact) but i’m so afraid to move them because of all the wires and tubes. shouldn’t we just let them rest? i’m assured it’s the best thing for them, and mark and i begin holding them all the time. sometimes, we are told, that holding becomes too stressful for our babies and their alarms go off and they need to go back into their incubators. it’s heartbreaking when we feel we can’t comfort them. we get the call in the night…emilie is sick. we shouldn’t be surprised when we arrive to learn that she had to go back into an incubator. why is this happening? she was starting to do so well. did we get her sick? we can’t be the reason. but i wasn’t feeling well the other day…i’m sure it’s my fault. i cry the rest of the night. we are getting closer to emilie’s discharge. we begin to feed her with a bottle. her alarms are going off. the nurse tells me, “it’s what preemies do; she’s being a stinker today.” i suppress my gut feelings because all i want to do is take my baby home. its discharge day and everyone is throwing a party for us. we’re scared and nervous, but it must be okay because this celebration means we’re out of the woods, right? as soon as we walk out and the doors close behind us, we’re on our way to a “typical” experience, right? emilie is going home with oxygen and an apnea monitor. we’re sure it won’t be long until she doesn’t need it. zachary isn’t ready yet and needs to be transferred to a step down unit. how will we manage to care for emilie and still make adequate time to be with zach? mark is still working. my mom is trying to be with me as much as possible but she’s still working so it’s difficult. mark stops to see zach every night on his way home. i try to get to the unit whenever i have coverage for emilie. it is so hard and i’m so tired. emilie is struggling and her feedings are going terrible. she is arching, crying, batting at the bottle, her lips are turning slightly blue and she’s vomiting. she is breathing so heavily and her apnea monitor alarm goes off every now and again. her pediatrician tells me that she must have reflux and prescribes some medication. she says to me, “i know this is your first child and you are nervous, but she is doing fine and gaining weight.” i must be overreacting, right? i’m sure as soon as i leave the pediatrician’s office, the feeds will begin to get better. but they don’t. a wonderful home health nurse tells me emilie needs to see a pulmonologist. what is that and why? i’m desperate…i will listen to anything anybody tells me at this point. i’m starting to fall apart. i’m not sleeping. mark and i are holding emilie upright all night long so her reflux doesn’t act up. we can’t go on this way. i request a pulmonology appointment and our pediatrician’s office tells us it will take three weeks to get her in. i say to them, “she won’t live for thee weeks.” i sit in an emergency room and won’t leave until someone grants us an appointment with a pulmonologist. they want to send me home. i politely tell them i’m not leaving until she can see a pulmonologist. i can see them on the phone with the pulmonologist. i sense they are thinking that i’m a “crazy” mom who is overreacting and refusing to leave. pulmonology sees her the next day and immediately admits her. her apnea monitor shows a dangerous heart rate decline every time she’s being fed. after an extensive work up, we find out that emilie is silently aspirating. she is on her way to aspiration pneumonia. the weight gain on the scale was false weight. it was fluid emilie and zach resting together shortly after their birth 14 • 2014 • developmental observer retention from the aspiration. thank god i fought for her. what could have happened if we continued to drown her during feeds? at this point, i have a complete breakdown. i’m not eating. i’m not sleeping and i’m throwing up often. without a formal diagnosis, it’s obvious i’m having a nervous breakdown. my mom makes an appointment for me to be seen. i’m completely glazed over and the doctor takes my mom aside and tells her i can’t be left alone. although i’m not having any suicidal thoughts or thoughts of hurting emilie, i definitely have become detached from my daughter, and i’m operating in survival mode. now looking back, i can’t imagine how i could have been that way. my love for emilie is something i can’t even describe. i don’t know what i would ever do without her and i tell her that quite often. she always smiles. following the study that showed emilie was aspirating, a nasogastric (ng) tube is placed but it doesn’t mean the nightmare is over. emilie is constantly throwing up from the volume and i’m told i must get so much volume in her or her brain is at risk for not growing properly. how do i make up the calories every time she vomits? i become a human calculator and i try measuring what she vomits so i can be sure to get the amount back in. it’s a daily nightmare and every morning i wake up with dread because i know our day is going to be another day of worry. zachary remains hospitalized and his oxygen needs are getting worse. when i ask about this, the doctor and nurses do not seem concerned at all. i also share with them that emilie was silently aspirating and i’m concerned zachary may be having the same problem. i request a swallow study and it’s denied. they don’t send babies from the step down unit for swallow studies. i feel completely dismissed, frustrated and deflated. the minute zachary is released from the unit and transitioned home, i get our gastroenterologist/gi doctor to see zachary and he orders a swallow study. it comes back positive…zachary has been silently aspirating and is placed on ng tube feedings. now i have two babies at home on feeding tubes, oxygen and apnea monitors. i feel so alone and scared. mark is doing his best to help me, but he also needs to work. i’ve already had to stop working and the bills are piling up. luckily we were able to get some support from our arizona early intervention program and we’re granted at home nursing help. zachary isn’t doing well. we take him in for an endoscopy and we are met in the waiting room by a cardiac physician who says, “mr. and mrs. linn, we need to move zachary to the cardiac icu. we aren’t sure what is happening yet, but zachary wasn’t able to sustain himself under anesthesia and we need to get him to the icu immediately.” what? we aren’t prepared for this. zachary spends the next six months in and out of the hospital until the doctors tell us he has a terminal heart defect that can’t be repaired. we lose him at one year and three days old. we get to hold him and tell him how much we love him. the pain is unbearable. at this point, i am pregnant with zachary’s brother. i ask zachary to promise me he’ll give part of his soul to his baby brother because zachary has the sweetest, kindest soul. our zachary kept his promise. emilie’s feeds continue to be a nightmare. at almost three years old, our gastroenterologist suggests it may be time for an intensive feeding program. we had no idea feeding programs like this existed. we struggle for five months with the insurance company to get this covered. it will be a $40,000 program and there is no way we can take on that type of debt. thank goodness the insurance comes through. there were no intensive feeding programs in arizona at the time so we leave the state to attend a 10-week feeding program in virginia. my family takes turns staying with us in our hotel because mark needs to stay home and work, and we need help with our two-year old, while emilie attends the program. emilie and i are at the hospital six hours a day, five days a week for ten weeks. she does well and comes home only being fed 25% of her nutrition through her feeding tube. we continue to make progress on our own because nobody is trained in arizona to help carry on the protocol. during our journey to virginia, i was introduced to another wonderful mom named shannon goldwater. we were introduced by our children’s feeding therapist. as it turns out, shannon had triplets that were all on feeding tubes and she had been the one to recommend the virginia program based on her experience with her triplets. shannon and i discovered we lived within nine miles of each other. we went to the same pediatrician’s office, the same gi practice office, and the same feeding therapist. i remember shannon saying to me, “we can’t be the only parents going through this. we need to do something about this.” shannon and her husband, bob, proceeded to start a non-profit to help other infants, children and their families with feeding issues. when i returned from virginia, i volunteered my time to help move the organization forward. the organization was established in 2006, and now eight years later, ‘feeding matters®’ has a mission to bring pediatric feeding struggles to the forefront so infants and children are identified earlier, families’ voices are heard, and medical professionals are equipped to deliver collaborative care. our journey continued and at almost six years old, emilie’s gastrostomy tube (g tube) was removed. emilie went nine months without using her tube for any nutrion or hydration and learned to take all of her medications by mouth. we were thrilled, but our nightmare didn’t stop there. two months after the tube was removed, we needed to change one of emilie’s medications. it turns out the medication she had been on made her very hungry and we didn’t know it. once the medication was removed from her treatment protocol, her appetite slowly declined. she began to fall off of the growth chart again. the doctors didn’t seem as concerned as we were, so we took her out of state once again for feeding therapy. at seven years old, we visited an interdisciplinary feeding team in wisconsin and they were very worried. they told us emilie was malnourished and they wanted to put the g-tube back in. they reviewed all of the developmental observer • 2014 • 15 records from our arizona physicians. why didn’t our arizona physicians seem concerned? nobody had taken the time to look at emilie as a whole child. when the pieces were put together by the wisconsin team, the nutrition concerns were obvious. they conducted another swallow study and we discovered emilie had extremely large tonsils. we learned that emilie had been taking smaller amounts of food because of her large tonsils. i told them that emilie took “bird bites.” it all made sense after they took the time to further assess her. of course, if we all ate our meals in “bird bite” sizes, we would become full much more quickly and this is what happened to emilie. she had a sense of being full without getting enough nutrition to sustain her growing body. after having her tonsils removed, emilie began to catch up with weight gain. now at almost eleven years of age, emilie is a happy, healthy fourth grader who takes all of her nutrition orally. although we still worry about her, we are starting to “let go” and let her be her own person. genetically, both mark and i were very skinny as children, and part of this is going to play out the same way for emilie. she struggles a bit in school, but overall, she is bright and does well among her peers. she is a fashion queen and loves animals. emilie hopes to be a vet or a fashion designer. we capitalize on her strengths and do our best to preserve her self-esteem. she will be the successful young woman we always dreamed about. today mark and i talk about how “lucky” we are. we would never have used that word on march 15, 2003. our marriage remains stronger than ever and we are one of the “statistics” that made it. so many marriages are challenged when faced with trauma, especially as it relates to losing a child. today i am the executive director for feeding matters and i love what i do every single day. i get to help others who are going through this journey. although we wish we could have changed it all for emilie and taken away all of the pain she endured, she gave us a gift and we will forever be grateful to her for it. we have met the most amazing people along the way and our lives will forever be changed. to all of the other parents out there who have struggled, we admire your strength and please know you are not alone. chris linn is the executive director of “feeding matters” and lives in scottsdale, arizona with her husband mark, emilie, and her younger brother connor. she can be contacted at clinn@feedingmatters.org. emilie today, shining at ten-and-a-half years of age! 25th annual nidcap trainers meeting october 25 – 28, 2014 parador de segovia segovia, spain co-hosted by the hospital universitario 12 de octubre nidcap training center, madrid and the barcelona-vall d’hebron nidcap training center, barcelona, spain. (by invitation only) p h o to g rap h © tu rism o d e s eg o via 16 • 2014 • developmental observer d e v e l o p m e n ta l r e s o u r c e s joke wielenga, rn, phd publications january 2013 –april 2014 alipour z, eskandari n, ahmari tehran h, eshagh hossaini sk & sangi s. effects of music on physiological and behavioral responses of premature infants: a randomized controlled trial. complementary therapies in clinical practice. 2013; 19(3): 128-32. allegaert k, tibboel d & van den anker j. pharmacological treatment of neonatal pain: in search of a new equipoise. seminars in fetal and neonatal medicine. 2013; 18(1): 42-7. balbino ac, moreira leitão cardoso mvl, carvalho da silva rc & moraes km. preterm infants: behavioral responses to handling by the nursing team [portuguese]. revista enfermagem uerj. 2013; 20:suppl1: 615-20. blomqvist yt, frölund l, rubertsson c & nyqvist kh. provision of kangaroo mother care: supportive factors and barriers perceived by parents. scandinavian journal of caring sciences 2013 jun; 27 (2): 345-53. boyle jd & boyle em. born just a few weeks early: does it matter? archives of disease in childhoodfetal and neonatal edition. 2013; 98(1): f85-8. castellanos ma, schwartz s, leal r, chan rv & quiroz-mercado h. pain assessment in premature infants treated with intravitreal antiangiogenic therapy for retinopathy of prematurity under topical anesthesia. graefes archives for clinical and experimental ophthalmology. 2013; 251(2): 491-4. deindl p, unterasinger l, kappler g, werther t, czaba c, giordano v, frantal s, berger a, pollak a & olischar m. successful implementation of a neonatal pain and sedation protocol at 2 nicus. pediatrics. 2013; 132(1): e211-8. engmann c, wall s, darmstadt g, valsangkar b & claeson m. participants of the istanbul kmc acceleration meeting. consensus on kangaroo mother care acceleration. lancet. 2013; 382(9907): e26-7. european council for steiner waldorf education. improving the quality of childhood in europe 2013. volume 4: http://www.ecswe.org/publication-qoceurope-2013.php. fazilleau l, parienti jj, bellot a & guillois b. nidcap in preterm infants and the neurodevelopmental effect in the first 2 years. archives of disease in childhood fetal and neonatal edition. 2014 apr 2 [epub ahead of print]. flacking r, thomson g, ekenberg l, löwegren l & wallin l. influence of nicu co-care facilities and skin-to-skin contact on maternal stress in mothers of preterm infants. sexual and reproductive health care. 2013; 4(3): 107-12. goldstein, la. family support and education. physical & occupational therapy in pediatrics 2013; 33(1): 139-61. gonya j & nelin ld. factors associated with maternal visitation and participation in skin-to-skin care in an all referral level iiic nicu. acta paediatrica. 2013; 102(2): e53-6. graci a. a rounding system to enhance patient, parent, and neonatal nurse interactions and promote patient safety. journal of obstetric, gynecologic and neonatal nursing. 2013; 42(2): 239-42. heinemann ab, hellström-westas l& hedberg nyqvist k. factors affecting parents’ presence with their extremely preterm infants in a neonatal intensive care room. acta paediatrica. 2013; 102(7): 695-702. holmes av. establishing successful breastfeeding in the newborn period. pediatric clinics north america. 2013; 60(1): 147-68. iriarte roteta a & carrión torre m. experiences of the parents of extremely premature infants on the neonatal intensive care unit: systematic review of the qualitative evidence [spanish]. metas de enfermería. 2013; 16(2): 20-25. johnston c, campbell-yeo m, rich b, whitley j, filion f, cogan j & walker cd. therapeutic touch is not therapeutic for procedural pain in very preterm neonates: a randomized trial. the clinical journal of pain. 2013; 29(9): 824-829. kaffashi f, scher ms, ludington-hoe sm & loparo ka. an analysis of the kangaroo care intervention using neonatal eeg complexity: a preliminary study. clinical neurophysiology. 2013; 124(2): 238-46. kantrowitz-gordon i. expanded care for women and families after preterm birth. journal of midwifery & women’s health. 2013; 58(2): 158-66. lantz b. gender differences in reasons, facilitators, and barriers for parental presence in the nicu. nordic journal of nursing research & clinical studies / vård i norden 2013; 33(1): 61-63. lebel v & aita m. developmental care principle-based concept analysis. [french] rech soins infirm. 2013; 113: 34-42. liaw, jj, luke y, lee cm, fan hc, chang yc & cheng lp. effects of combined use of non-nutritive sucking, oral sucrose, and facilitated tucking on infant behavioural states across heel-stick procedures: a prospective, randomised controlled trial. international journal of nursing studies. 2013; 50(7): 883-894. loewy j, stewart k, dassler am, telsey a & homel p. the effects of music therapy on vital signs, feeding, and sleep in premature infants. pediatrics. 2013; 131(5): 902-918. lópez maestro m, melgar bonis a, de la cruz-bertolo j, perapoch lópez j, mosqueda peña r & pallás alonso c. developmental centered care. situation in spanish neonatal units. [spanish] an pediatr (barc). 2013; doi: 10.1016/j.anpedi.2013.10.043. [epub ahead of print]. developmental observer • 2014 • 17 maliheh k & mozafarinia ms. supporting fathers in a nicu: effects of the hug your baby program on fathers’ understanding of preterm infant behavior. journal of perinatal education. 2013; 22(2): 113-119. mannix t. helping parents of pre-term babies to cope. nursing review. 2013; (4): 31. maziero bv. teamwork in the neonatal intensive care unit. physical & occupational therapy in pediatrics. 2013; 33(1): 5-26. mcanulty g, duffy fh, kosta s, weisenfeld ni, warfield sk, butler sc, alidoost m, bernstein jh, robertson r, zurakowski d & als h. school-age effects of the newborn individualized developmental care and assessment program for preterm infants with intrauterine growth restriction: preliminary findings. bmc pediatrics. 2013; 13:25. mcnair c, campbell yeo m, johnston c & taddio a. nonpharmacological management of pain during common needle puncture procedures in infants: current research evidence and practical considerations. clinics in perinatology. 2013; 40(3): 493-508. milgrom j, newnham c, martin pr, anderson pj, doyle lw, hunt rw, achenbach tm, ferretti c, holt cj, inder te & gemmill aw. early communication in preterm infants following intervention in the nicu. early human development. 2013; 89(9): 755-762. mosqueda r, castilla y, perapoch j, lora d, lópez-maestro m & pallás c. necessary resources and barriers perceived by professionals in the implementation of the nidcap. early human development. 2013; 89(9): 649-653. moyer-mileur lj, haley s, slater h & beachy j. massage improves growth quality by decreasing body fat deposition in male preterm infants. the journal of pediatrics. 2013; 162(3): 490-495. mosqueda r, castilla y, perapoch j, de la cruz j, lópez-maestro m & pallás c. staff perceptions on newborn individualized developmental care and assessment program (nidcap) during its implementation in two spanish neonatal units. early human development. 2013; 89(1): 27-33. nelson am. a comprehensive review of evidence and current recommendations related to pacifier usage. journal of pediatric nursing. 2012; 27(6): 690-699. neu m, robinson j & schmiege sj. influence of holding practice on preterm infant development. the american journal of maternal child nursing. 2013; 38(3): 136-143. nogueira moreira ra, tavares de lavor vf, de oliveira brito siqueira aã, moreira barros l, marques frota n & tavares luna, i. affective participation of parents in child support in intensive care unit. journal of nursing ufpe / revista de enfermagem ufpe. 2013; 7(4): 1128-1135. ohlsson a & jacobs se. nidcap: a systematic review and meta-analyses of randomized controlled trials. pediatrics. 2013; 131(3) e881-93. responses to ohlsson a, jacobs se article: als h. re: ohlsson and jacobs, nidcap: a systematic review and meta-analyses. pediatrics. 2013; 132(2): e552-3. haumont d, amiel-tison c, casper c, conneman n, ferrari f, huppi p, kuhn p, lagercrantz h, moen a, pallasalonso c, pierrat v, poets c, sizun j, valls y soler a & westrup b. nidcap and developmental care: a european perspective. pediatrics 2013; 132(2): e551-2. lawhon g, helm jm, buehler d, mcanulty g, kosta s, alberts jr, als h, mader s, daly m, sizun j, vandenberg k & warren i. nidcap federation international response. pediatrics. 2013; 132(2): e550-1. ohlsson a & jacobs se. authors’ response: nidcap: a systematic review and meta-analyses of randomized controlled trials. pediatrics. 2013; 132(2): e553-7. ou-yang mc, chen il, chen cc, chung my, chen fs & huang hc. expressed breast milk for procedural pain in preterm neonates: a randomized, double-blind, placebo-controlled trial. acta paediatrica. 2013; 102(1): 15-21. pineda rg, castellano a, rogers c, neil jj & inder t. factors associated with developmental concern and intent to access therapy following discharge from the nicu. pediatric physical therapy. 2013; 25(1): 62-69. commentary by lovelace-chandler v & chitwood c. pediatric physical therapy. 2013; 25(1): 70. pineda rg, neil j, dierker d, smyser cd, wallendorf m, kidokoro h, reynolds lc, walker s, rogers c, mathur am, van essen dc & inder t. alterations in brain structure and neurodevelopmental outcome in preterm infants hospitalized in different neonatal intensive care unit environments. journal of pediatrics. 2014; 164(1): 52-60. ramachandran s & dutta s. early developmental care interventions of preterm very low birth weight infants. indian pediatrics. 2013; 50(8): 765-770. reynolds lc, duncan mm, smith gc, mathur a, neil j, inder t & pineda rg. parental presence and holding in the neonatal intensive care unit and associations with early neurobehavior. journal of perinatology. 2013; 33(8): 636-641. roegiers e, alderson m & van durme t. practices surrounding developmental care: exploration of barriers and remedy strategies suggested by the experts. [french] rech soins infirm. 2013; (115): 92-106. rodrigues ac & guinsburg r. pain evaluation after a non-nociceptive stimulus in preterm infants during the first 28 days of life. early human development. 2013; 89(2): 75-79. roofthooft dw, simons sh, anand kj, tibboel d & van dijk m. eight years later, are we still hurting newborn infants? neonatology. 2014; 105(3): 218-226. 18 • 2014 • developmental observer schoch de, lawhon g, wicker la & yecco g. an interdisciplinary multidepartmental educational program toward baby friendly hospital designation. advances in neonatal care. 2014; 14(1): 38-43. sellam g, engberg s, denhaerynck k, craig kd & cignacco el. contextual factors associated with pain response of preterm infants to heel-stick procedures. european journal of pain. 2013; 17(2): 255-263. da silva morais pa, dodt cmr, farias ml, de melo mg, muniz filha jmm & chaves mce. measuring the pain in newborn infants during peripheral and capillary venous puncture. journal of nursing ufpe / revista de enfermagem ufpe. 2013; 7(2): 511-517. stevens b, yamada j, lee gy & ohlsson a. sucrose for analgesia in newborn infants undergoing painful procedures. cochrane database of systematic reviews. 2013; 1: cd001069. stewart k. bliss re-launches popular look at me booklet. journal of neonatal nursing. 2013;19(1):23. stokowski la. single-family room nicu influences infant outcomes. advances in neonatal care. 2013; 13(4): 228-229. swanson jr, peters c & lee bh. nicu redesign from open ward to private room: a longitudinal study of parent and staff perceptions. journal of perinatology. 2013; 33(6): 466-469. szucs ka & rosenman mb. familycentered, evidence-based phototherapy delivery. pediatrics. 2013; 131(6): e19821985. turnbull v & petty j. evidence-based thermal care of low birthweight neonates. part two: family-centred care principles. nursing children & young people. 2013; 25(3): 26-29. van hus jw, jeukens-visser m, koldewijn k, geldof cj, kok jh, nollet f & van wassenaer-leemhuis ag. sustained developmental effects of the infant behavioral assessment and intervention program in very low birth weight infants at 5.5 years corrected age. journal of pediatric. 2013; 162(6): 1112-1129. valizdeh l, ajoodaniyan h, mamnabati m, zamenzdeh v & vahideh l. nurses’ viewpoint about the impact of kangaroo mother care on the mother--infant attachment. journal of neonatal nursing. 2013; 19(1): 38-43. books inga warren & cherry bond caring for your baby in the neonatal unit: a parents’ handbook. http://www.earlybabies.com/ conferences the fourth annual nomas international symposium: location: san francisco, usa date: october 10-12, 2014 “it’s all about feeding” http://www.nomasinternational.org/ symp_2014.php the 5th congress of the european academy of paediatric societies (eaps): date: october 17-21, 2014 location: barcelona, spain http://www.kenes.com/paediatrics miami neonatology 2014: location: fontainebleau miami beach, usa date: november 12-15, 2014 http://pediatrics.med.miami.edu/neonatology/international-neonatal-conference hot topics in neonatology: location: washington, usa date: december 7-10, 2014 http://www.hottopics.org/ brain monitoring & neuroprotection in the newborn: location: clearwater beach, florida, usa date: not yet known, 2015 www.cme.hsc.usf.edu 28th gravens conference on the physical and developmental environment of the high risk infant: location: clearwater beach, florida, usa date: march 2015 www.cme.hsc.usf.edu the 25th annual nidcap trainers meeting location: segovia, spain date: october 25 – 28, 2014 http://www.nidcap.org/training_meeting. aspx websites and downloads http://www.socksforlife.org/ http://www.efcni.org/ http://www.babybloom.nl/ http://www.preemieworld.com/ www.babyfirst.com video and movie segments in english noise in the nicu http://www.youtube.com/watch?v=yjq7x dfq8ng neonatal doctors and nurses can exchange insight and experiences online across a range of neonatal care specialties http://www.youtube.com/user/ babyfirstchannel inga warren, an internationally recognized nidcap trainer talks about the zaky and kangaroo zak http://www.youtube.com/watch?v=jqjs n6n4mdc we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to joke wielenga, rn, phd at: developmentalobserver @nidcap.org. developmental observer • 2014 • 19 somehow i am drawn back to the very early days of bringing infant development to newborn intensive care, about 1990 to about 1994. in 1990 i moved to a large city with 6 nicus and a combined bed capacity of over 200 infants. shortly after taking up my position as a nursing instructor, i began making appointments at these hospitals in hopes of an affiliation. no one had heard of hospital care to advance the development of preterm infants. outpatient, yes, but not before discharge; and no one was interested in trying it out. except…the clinical director of a large, university affiliated children’s hospital. he granted me an appointment and sat stone-faced listening to my presentation. when i got to the findings of the 1986 als’ study he got up, went straight to a certain file cabinet, opened a drawer and pulled out the reprint in one deft move, and began grilling me, to see if i knew what i was talking about. he invited me to join rounds when he was on service, and to attend the fellows’ weekly review classes preparing for board examinations. i don’t know if he was ever convinced on the merits, but he opened the door for infant development and nidcap in that famous nicu and gave me a chance to learn the pathophysiology of prematurity and, with it, enough credibility to enter the realm. about 9 months later, an adventurous (and competitive) former nicu nurse, vice president of the rival university hospital, had heard that something interesting was happening over there and paid the nursing school half my salary to bring “it” to her hospital. she quickly understood what “it” was about. she and the two successive nurse managers were the crux of changing policy and practice. the efforts of many would have died on the vine without the courageous personal support and exercise of authority of these three nurse executives. fortunately for me, the neonatology group was without a director, distracted with internal conflict, and not at all interested in nursing. this gave a small group of us free reign to experiment, with the manager’s blessing. i started a journal club open to anyone and it was well attended. this caught the neonatologists’ attention and they assigned one of their own to check up on it. during the second or third meeting, the designee became quietly and increasingly agitated and finally burst out, “if there was anything to this we would be doing it already!” he stomped out and no one took his place. in 1990, physical and occupational therapists and child life clinicians were barred from the nicu. after chipping away, the nurse manager and i got them in the door and together we observed infants and made verbal recommendations, for small changes in infant care, to the nurses we thought would not complain later. “infant development” products had not yet been invented. our small group of nurses and therapists learned to bed infants beautifully with undershirts, diapers, smooth procedure pads… whatever we could think of to fit a baby’s body. the nurse manager, whose name was ivy, devised a way to twirl a blanket around the baby’s trunk, hips, and legs to make a flexible boundary thus allowing intentional movement. the baby could be picked up in the same blanket without the disturbance of wrapping/rewrapping. we called it the ivy wrap. (it was not a burrito wrap.) for very small babies, a well-placed cotton ball, with an open diaper laid beneath, became a fine substitute for diapers, permitting legs, hips, and back to move freely. staff were amazed at the infants’ flexion into a ball. this can’t happen with a diaper. a respiratory therapist (the first converted by less need for respiratory support) made a bed out of the paper box that packaged gauze, decorated it to look like a race car, and padded the inside. it was perfect for tiny infants who were still, at that time, required to remain on their backs. some nurses started persuading medical students, residents, and fellows to skip the automatic morning blood draws. this was not easy because that person would then have to defend the omission to his/her superiors. we tried various ways of connecting infants and parents. i’m fairly certain, that we were the first to use skin-to-skin care in this very big state. of course there were no proper recliners and parents regularly departed from our planned seating to make themselves comfortable. i have a photo of a mother, tilted way back in a rocking chair with her feet up on the incubator bumper, talking on the phone. she and “little will” were happy that way for hours. at some point, the nurse manager became upset about one of the fathers, a lovely man from mexico who came to the nicu in his best clothes…western boots, fancy white shirt, and white cowboy hat. having learned how to understand his own daughter, he sometimes went to settle other babies who were crying or uncomfortable. “kathleen. this parents-beingrelaxed thing has gone too far.” an influential nurse was assigned to help me write the script for a videotape about feeding. at our first meeting we sat sideby-side at the table in the staff lounge, while she silently took a long time to read my draft. finally, she turned and looked me in the face with the glare of a mother managing an impossible child, and said, “you can have ‘communicate,’ and you can have ‘facilitate,’ but you can’t have both in the same sentence. just too much phd.” then she grinned, and i actually fell off the chair laughing. in a presentation at a regional nann conference a long-time nicu nurse concluded her remarks by saying, “i used to think it was my bed, my baby, and my space. now i know it’s the baby’s bed, the mother’s baby, and our space.” if that seems obvious now, it was profound at the time, and writing this still brings me to tears. of course it was not all roses and super care. the neonatologists finally hired a director, “the man of science,” who truly did not get it. on his first rounds as attending physician he saw the brand new skin-to-skin reclining chair. he then gave a long explanation to the crowd about the complex physiologic changes reflections on “the early days” m. kathleen philbin, rn, phd 20 • 2014 • developmental observer in fat with cold exposure. he then announced that the recliner had to go, and that holding infants outside the incubator had to stop. after hours of meetings and negotiations, a major staff training effort, and three weeks of a complex protocol with data collection and graphs, his attention shifted, and baby-holding faded back to nursing judgment. a year or so later, he was the primary neonatologist of a very small baby, gabriel, with at least three dnrs and very bad bpd. his mother spent hours and hours of daily skin-to-skin holding. the nurses moved her to the isolation room to conceal it. gabriel was discharged as a darling boy with lungs that, yes, would be a problem, but he was feeding and growing and having none of the usual bpd behavior. one day the man of science, who had never been in my office, opened the door abruptly looking quite stern and sat in the metal chair by the door. i was scared. he said, “it’s your program. there’s no other explanation for gabriel.” trying for upbeat, i said, “well, he had a good doctor for three months and his mother…” “no! it was your program.” there was a silence and he left. so…the man of science was touched by an intense personal experience…not data. after that he was one of our most effective allies. many nurses wanted nothing to do with me because i had been hired by the vice president and, therefore, must be involved in an administration trap. older nurses trained in egypt and the philippines distained non-protocol nursing. they flatly refused any change in their bottle-feeding. years later, one of them took me aside and said with some affection, “you know, kathleen, i wasn’t going to do anything because you said it. i had to find out for myself.” by small degrees, and not without a little conflict and compromise…a wonderful, very quiet, familycentered nicu was created. life ebbs and flows. life ebbs and flows. financial consultants determined that “re-engineering,” based on data from adult units, would increase customer satisfaction and save money. ironically, the new system was implemented first in the nicu because we were the best organized for patient care. among many other things, “re-engineering” undid our hardwon consistency of nurse to infant/family assignments, one of the reasons for our head-of-the-line selection. many nurses quit, the consequent staff shortage was so bad that other nurses quit, and eventually new ones were hired. the champion medical director changed positions and a new one was hired along with some well-known neonatal physician scientists who lived by the emerging bludgeon of randomized controlled trials.there were no large randomized controlled trials of infant development and, therefore, it was junk; the overhead lights blazed on again. an economic slump caused the hospital to be sold to a rich suburban chain and our champion vice president was replaced by a very young protégé of the new, from-the-suburbs chief executive officer. this young man, four years out of business school, announced at one staff meeting, “we don’t want to be on the cutting edge. we want to be on the bleeding edge. why waste money finding out what doesn’t work? other places can take care of that.” his imposed cost savings reduced nursing numbers to the point that appropriate one-to-one assignments became three-to-one. a fine nidcap nurse who quit rather than give bad care said, “if it doesn’t have to go on paper, it doesn’t happen.” these years later, i don’t know how infant care is delivered at that hospital. but i do know, if it’s not corny or sentimental to put it this way, that “for one, brief, shining moment” we made life better for many infants and parents and caregivers. that is enough. nfi mission statement the nidcap federation international (nfi) promotes the newborn individualized developmental care and assessment program (nidcap). nidcap is the most comprehensive, evidence-based model of developmentally supportive care and assessment for preterm and full-term newborns and their families in the hospital, and the transition home. the nfi aspires for all newborns and families to receive hospital care and assessment in the relationship based, family integrated nidcap model. the nfi assures the quality of nidcap education, training and certification for professionals and hospital systems, and advances the philosophy and science of such care. adopted by the nfi board, april 27, 2013 developmental observer • 2014 • 21 heidelise als, phd jim helm, phd debra paul, otr congratulations to our founder, past president and chair of the nfi program committee heidelise als, phd in being named the recipient of the serge lebovici award of the world association of infant mental health (waimh) given in recognition of significant contributions to the international development of infant mental health through her work with newborns, especially the assessment and treatment of premature infants and their families. the organization writes: “as a result of your work, you have changed the care of premature infants to respect the preterm baby’s sensitivities and to humanize the physical environment of the nicu, and, at the same time, by supporting the emotional experiences of preterm parents.” nominees typically are individuals who have been actively involved in collaborative efforts that have cross-national implications for infant mental health. past recipients include charles zeanah and daniel stern. congratulations to jim helm, phd, director of the carolina nidcap training center, wakemed health and hospitals and vice president for administration of the nidcap federation international (nfi). jim is the recipient of the healthcare hero award in the medical professional category from triangle business journal. as a developmental specialist and infantfamily specialist, jim helps to guide and support the intensive nursery in providing individualized, developmentally supportive, family-centered care. he works with medical staff, nurses, families, other hospital colleagues and community organizations to support babies and their families that come through wakemed’s newborn intensive care nursery (nicu). jim was instrumental in guiding and supporting wakemed’s nicu to achieve nidcap nursery certification – the fourth nursery in the world to be recognized by the nfi as an exemplary nursery in providing developmentally supportive care at a very high level, that is integrated throughout the nursery experience, and is a part of wakemed health and hospitals’ care philosophy and practice. as jim said, “each baby, each family has their own story, their own communication – it’s fascinating.” congratulations are offered to debra paul, program manager of the occupational therapy department and nidcap professional at children’s hospital colorado. she was elected as co-chair for the colorado special education advisory committee (cseac) at the annual cseac retreat this past summer. she was appointed to cseac in april 2011 and is serving a six-year appointment as a parent representative from congressional district 2. cseac is a state-level committee mandated by federal and state law. the purpose of this committee is to provide input and assistance to the state board of education, advise the state director of special education, to advocate and promote communication, collaboration and partnership among educational service providers, children/ youth, parents and administrators, and to serve as a liaison between parents of children with special needs, local educational agencies and the colorado department of education. since joining cseac, debra has served on the communications subcommittee as well as the mental health ad hoc subcommittee. she will serve as a co-chair elect for a year and will officially assume her role as co-chair for cseac beginning in july 2014 through july 2016. award recipients & achievements of nidcap professionals 22 • 2014 • developmental observer jacques sizun, md, nathalie ratynski, md silke mader receives “prix courage” congratulations to jacques sizun, md, director of the french nidcap center and nathalie ratynski, md, nidcap trainer at the medical school, université de bretagne occidentale and university hospital brest, france. jacques and nathalie have published a french book entitled “l’enfant né prématurément.” this book explains to parents how early family-centered, individualized care is important for the future of their preterm infant. every year in france, 50,000 premature babies are born; this represents 6-8% of all births. technological advances in recent decades have increased their survival, but the long-term development, especially neurological, remains a matter of concern for parents and professionals. the nidcap approach to care or “developmental care” seeks to change the environment so that sensory stimulation and rhythms of care are tailored to the capabilities of these fragile infants, and parenting long ignored, becomes essential to the cherishing and nurturing of these infants. “l’enfant né prématurément” is based on the contents of drs. sizun’s and ratynski’s lectures, workshops and training since the beginning of their nidcap “journey” in brest. isbn: 978-2343-01995-6 • november 2013 • 134 pages http://www.editions-harmattan.fr/index.asp?navig= catalogue&obj=livre&no=41722 congratulations are offered to silke mader, founder and chairwoman of the european foundation for the care of newborn infants (efcni). she was awarded the “prix courage” on november 5, 2013, by the public-service german television broadcaster zdf television program, “ml mona lisa,” and the french beauty brand, clarins. the award recognizes the efforts of exceptional women who work tirelessly to help ill or underprivileged children. silke received this award for her work to bring together all professionals who can make a difference and improve the conditions of infants born prematurely. she advocates for high-quality prevention methods, treatment and care in the hospital, as well as long-term follow-up and continuing care. silke joins a group of illustrious women who have had their notable work recognized in the past. developmental observer • 2014 • 23 president: gretchen lawhon, phd, rn, cbc, faan vice president for administration: james helm, phd vice president for organizational advancement: deborah buehler, phd treasurer: gloria mcanulty, phd secretary: sandra kosta, ba assistant treasurer: sandra kosta, ba additional directors: jeffrey alberts, phd heidelise als, phd vicki batkin bjornson nikk conneman, md rita cummings, ma mandy daly silke mader kathleen vandenberg, phd elected officers of the nidcap federation international 2013–2014 this has been an exciting year for nncp. significant progress has been made, and interest has developed, as nurseries around the world have taken the initiative to embark upon the process of nidcap nursery certification. a short description of applicant progress and increased interest in this learning and evaluation process is provided below. current nncp applicants: • scandinavian nncp applicants, one in denmark and one in sweden have submitted nncp applications: parts i and ii for nncp review. if the nncp site review teams determine that the applications are complete, nncp site visits will be scheduled in the near future. • french nncp applicant has submitted nncp application: part i in october, 2013. after review of this submission the applicant was invited to submit nncp application: part ii and supporting documents (i.e., site scored nursery assessment manual and the nursery assessment manual: provision of evidence). • italian nncp applicant is currently working toward submission of nncp application: part i. interest in nncp: • the kingdom of saudi arabia has recently expressed interest in learning more about nncp. their nidcap trainer recently provided a presentation on nidcap nursery certification to them in april of this year. • another nidcap training center in the united states has recently requested more information regarding nidcap nursery certification and is seriously considering embarking on this journey. for information on eligibility requirements and the nncp nursery certification process, please see: www.nidcap.org; and/or contact rodd hedlund, med, nncp director at: nncpdirector@nidcap.org or 785-841-5440. nfi-nidcap nursery certification program (nncp) applicants and interest grows for nidcap nursery certification erasmus mc-sophia children’s hospital, rotterdam, the netherlands 24 • 2014 • developmental observer o n t r a n s f o r m at i o n a n d s h i n i n g continued from page 2 s u p p o r t i n g fa m i l i e s continued from page 9 a m o t h e r ’ s s t o r y continued from page 4 opportunity, but i didn’t anticipate how profoundly it would shape my thinking. i have since attended a workshop by dr. jean clinton (how love builds brains) and another by dr. bruce perry (designing trauma-informed services for children and families) on how trauma and neglect affects brain development. the information they shared reinforced for me the tremendous importance of those first months in the world... when the brain is ‘wiring’ pathways that will be used for all the higher brain function to follow. i never know how long each of the infants that i am caring for will stay, and i can’t prevent the sometimes questionable and occasionally tragic decisions that are made for them once they leave our home. however, while they are with me, i can use nidcap to better respond to each infant and provide an environment that supports their healthy brain development. the foundation of self-regulation is an asset they will take with them wherever they go from here. thank-you for all you are doing on behalf of infants and the families who love them, a grateful foster mom. ps: i ‘googled’ dr. browne, which led me to www.wonderbabiesco.org. on that site’s ‘resources’ link, among other great material, i found this quote in the article ‘early experiences can alter gene expression and affect long-term development’ from the center on the developing child, harvard university: ‘the experiences children have early in life---and the environments in which they have them---shape their developing brain architecture and strongly affect whether they grow up to be healthy, productive members of society. this growing scientific evidence supports the need for society to re-examine the way it thinks about the circumstances and experiences to which young children are exposed.’ i got goose bumps and think i may have heard choir music in the background. preach it, brothers and sisters!” exactly thirteen weeks after i met this amazing baby girl, molly was moved to a foster-to-adopt home. i expected the change of environment and caregiver would cause her to temporarily lose some of the ground that she had gained and it did, but once hearing molly’s story, her new parents were very willing to implement the same approach of introducing change in segments, eliminating as many other stressors as possible, and waiting for her to self-regulate before taking the next step. it took about two weeks before they felt she was ready for that next step, which was welcoming her older sibling into their family as well! after a brief honeymoon phase, her sibling (who was exposed to a very chaotic environment until six months of age) is acting out in quite a robust fashion, but molly, now six months herself, seems to be taking it in stride, as would her namesake, the “unsinkable molly brown.” apply it in the provision of many tiny episodes of care; in brief moments of interaction; in everyday opportunities for support; in hours of work and reflection; and during days, evenings and nights of striving to do better. the journey toward nidcap nursery certification would not have been possible without the vision and support of our nicu’s leadership including: professor tzipi dolfin, md, former head of the neonatal department; ita litmanovitz, md, current head of neonatology; khoolood shabita, rn, nicu nurse manager; and anat shapsa, rn, former nicu nurse manager. as we look into the future, we are aware of the persistence and commitment involved in promoting transformation, maintaining change, and striving for excellence. our gradual steps toward becoming one of the nfi’s nidcap training centers around the world are certainly a constructive way to keep the good work going. as we move forward in this path, we would feel honored to more formally share and expand our experience and knowledge to other newborn nurseries in our region. “i think that once you form the relationship and you have the continuity of care, then you develop that trust and respect with those families and then, they are more apt to tell you what they need.” conclusions this study illustrates that relationships between healthcare providers and newly immigrated families in the nicu are complex and nuanced, and hence fragile. we assert that in the global world in which we currently practice, there is an obligation to systematically amplify the cultural competence of healthcare providers and nicu organizations. we call for greater awareness of culturally competent care, and more research on interventions that will show benefits to families in the nicu. references 1. coker, t.r., rodriguez, m.a., & flores, g. (2010). family-centered care for us children with special healthcare needs: who gets it and why? pediatrics. 2010; 125:1159–1167. doi:10.1542/peds.2009-1994 2. david b. nicholas, leonora hendson, & misty d. reis. connection versus disconnection: examining culturally competent care in the neonatal intensive care unit. social work in healthcare. 2014; 52(2): 135-155, doi10.1080/00981389.2013.864377. 3. rani h. srivastava. the abc (and de) of cultural competence in clinical care. ethnicity and inequalities in health and social care. 2008; 1(1): 27-33. developmental observer • 2014 • 25 developmental observer nidcap federation international board of directors and staff 2013–2014 the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president gretchen lawhon, phd, rn, cbc, faan nidcap master trainer email: premieg@gmail.com vice president for administration james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org vice president for organizational advancement deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary/ assistant treasurer sandra kosta, ba national nidcap training center email: sandra.kosta@childrens.harvard.edu jeffrey alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu vicki batkin bjornson marketing consultant marketing/business development email: vickib@netwiz.net nikk conneman, md nidcap trainer director, sophia nidcap training center rita cummings, ma head of fundraising university of st. andrews st. andrews, scotland mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk silke mader family representative, munich, germany founder, european foundation for the care of newborn infants email: silke.mader@efcni.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: vandenbergk@peds.ucsf.edu rodd hedlund, med director nidcap nursery certification program nidcap trainer email: nncpdirector@nidcap.org www.nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: vandenbergk@peds.ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com uk nidcap training centre at st. mary’s st. mary’s hospital imperial college healthcare nhs trust london, england director and contact: inga warren, dip cot, msc email: inga.warren@imperial.nhs.uk children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain, established 2011 hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, med contact: windy crow email: stjosephnidcap@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org/membership.aspx, or email us at nfimembership@nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment developmental observer 20 25 | v o l 1 8 | n o . 1 the official publication of the nidcap® federation international dr. heidelise als was more than a mentor; she was a guiding force in shaping my career and fostering my personal growth. her commitment to compassionate care continues to impact my approach to developmental care, along with engagement with life, family, and my professional career. dr. als shared her life experiences generously, weaving personal insights into her philosophy. her support extended to fostering my professional growth and instilling faith in my potential, which remains a constant source of motivation. to me, she was family, always available with sage advice and encouragement. i draw directly from the principles dr. als instilled in me. i strive to embody her philosophy that the care we provide effects outcomes and lifelong development. her words, “it matters how we listen to the voice of and care for each newborn and each family. it matters how we care for one another and for ourselves,” continue to inspire my approach. these words serve as a powerful reminder of the profound responsibility we hold as professionals in newborn care to deliver thoughtful, individualized attention during the earliest and most critical stages of a child’s development. the heidelise als lecture – 35th nidcap trainers meeting 2024 shaped by wisdom: dr. heidelise als’ impact on my professional journey the path forward is rich with opportunities. -samantha butler inside the heidelise als lecture ................... 1 editorial .............................................................. 2 the synactive model: ........................... 6 individuals, hospitals, and systems abstracts from the 2024 .................. 9 nidcap trainers meeting poster abstracts from the ............. 16 2024 nidcap trainers meeting behind the scenes ............................... 24 global perspectives ........................... 27 nidcap training centers ................ 31 worldwide: france nidcap training centers ............... 35 doi:10.14434/do.v18i1.40856samantha butler, phd doi:10.14434/do.v18i1.40852 continued on p.2 2 • 2025 • developmental observer this issue offers insights from the recent 35th nidcap trainers meeting, highlighting the exchange of knowledge that defines our global community. these meetings continue to grow in strength and scope, showcasing an outstanding diversity of information and experiences. the picturesque setting of toulouse in the south of france provided a vibrant backdrop for the event, which also served as an invaluable opportunity for networking among delegates representing many countries. in this issue, samantha butler shares the wisdom and legacy of heidelise als, taking us on her inspirational nidcap journey—a testament to vision and dedication. deborah buehler introduces us to an innovative perspective on the synactive theory, exploring its application across all areas of care. the abstracts featured in this issue reflect the diversity and depth of the meeting. from groundbreaking research and new educational approaches to parent-led initiatives and strategies for expanding nidcap expertise. additionally, we are delighted to include poster abstracts that highlight the incredible work of our nfi members. for the first time, we have translated several articles from the original french, making their valuable content accessible to a broader audience. this new venture was made possible thanks to the generous assistance of kiki remont, and i extend my gratitude for her efforts. i would love to hear your thoughts on this new approach to fostering accessibility and understanding. thank you for your continued engagement and dedication to advancing the nidcap mission. kaye spence am facnn senior editor – developmental observer adjunct associate professor australasian nidcap training centre/ university of western sydney editorial cover image: photograph used with permission of the mother in shanghai doi:14434/do.v18i1.40855 a french treat dedication to care from the first moment i observed dr. als with an infant, i was struck by her profound compassion and keen insight into the experiences of newborns and their families. her dedication to improving care for the most fragile patients deeply resonated with me. she demonstrated that even the smallest adjustments, rooted in respect and understanding, could create a transformation on the well-being of others. dr. als’ influence guides how i create environments that prioritize family-focused developmental practices. dr. als emphasized that every detail matters, not just in medicine but in every aspect of how we present ourselves. she reminded us that we are public figures and thus all interactions matter and deserve intention. whether creating an environment to uplift others, preparing for an assessment, or organizing a meeting, attention to detail shapes how messages are received and how others feel within that space. she emphasized the power of projecting confidence, clarity, and empathy to rear connection and trust. this philosophy has extensively shaped my approach, driving me to approach interactions and decisions with thoughtfulness, ensuring that i reflect a sense of well-being, respect, and intentionality. philosophy and mentorship this deep commitment to care was also reflected in her approach to mentoring. dr. als embodied an extraordinary work ethic, dedicating countless hours to her mission and inspiring others with her drive and high expectations. her approach to training was rigorous and comprehensive. through the nidcap curriculum, she cultivated a philosophy of thoughtful engagement, observation, and practice, cultivating a community of clinicians dedicated to individualized developmental care. i feel a profound responsibility to honor and carry forward her vision. in my own nidcap training efforts, i strive to uphold her meaningful approach, providing structure and depth while also offering additional guidance to make the process accessible and encouraging for trainees. this sense of responsibility drives me to motivate others to see the insights she uncovered, publish meaningful research, and promote transformative care practices that improve outcomes for infants and families. dr. als fostered a commitment to listening to, supporting, and inspiring others. through her example, i advocate for the vital role we play in the lives of infants, their families, and others. i believe that as a professional in the field of neurodevelopment, acknowledgments: external reviewers 2024 – samantha butler, marzieh hasanpour, kiki remont. erratum: vol 17, no 3, page 16. the image caption should read: dr. mohammad heidarzadeh and dr. marzieh hasanpour. continued on p.3 2025 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master and apib master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board we hold a position of immense responsibility, to serve as the bridge between science, clinical care, compassion, and advocacy. our role transcends the walls of hospitals and the pages of medical journals; we serve as the voices for those who cannot stand up for themselves. advocacy in this context is not merely a choice, it is an ethical obligation. we are called to utilize our expertise, our voices, and our influence to ensure that our patients, their families, and our colleagues are recognized and prioritized. by doing so, we fulfill our moral duty to make a meaningful difference in the lives of those who rely on us most. i see advocacy as a natural extension of compassion, whether we are caring for a newborn in the icu, mentoring colleagues, or helping others navigate professional challenges. one of the most compelling reasons for our activism is the simple fact that hospitalized newborns cannot speak for themselves. infants, particularly those undergoing surgical interventions, are in their most vulnerable state. when we advocate for newborns, we are addressing their immediate medical needs and nurturing the foundation of their future health and developmental outcomes. as is the motto of nidcap, we are the voice of the newborn, ensuring that every decision made respects individuality and promotes growth. dr. heidelise als and dr. samantha butler. continued on p.4 4 • 2025 • developmental observer dr. als created nidcap, which provided a way to observe and understand infant behavior, minimize stressful experiences, decrease the separation of infants from parents, and optimize development with consistent caregiving. the art of reading infant behavior, a skill dr. als pioneered and emphasized, provided an understanding of the infant’s unique experiences and responses. by prioritizing observation, we collaborate with infants to enhance their development in a personalized way. i strive to motivate others in thoughtful interpretation of infant behavior, moving beyond surface-level solutions to connect with our patients, ensuring that every interaction is meaningful and tailored to a family’s unique circumstances. this approach was especially crucial during my transition from newborn medicine to the world of cardiology, where infant behavior varies greatly, but the ability to read and respond to cues remains invaluable in providing effective care. dr. als frequently reminded us of the meaningful influence of language in shaping perceptions and practices. she prioritized choosing words thoughtfully, because the language we use in policies, discussions, and everyday speaking reflects our values and priorities. this mindful use of language encourages us to affirm the roles of infants and families and avoid diminishing their significance. in my professional career, i am mindful of the power language holds and the impression it has on how we perceive relationships, responsibilities, and roles within the icu. nidcap care involves creating a culture where the language used consistently respects and values families, team members, and the infants themselves, reinforcing a collaborative and compassionate approach to care. dr. als’ teachings went beyond advocating for infants and families and extended to highlighting the importance of nourishing all members of the team. this includes acknowledging the perspectives of professionals whose contributions are often overlooked. therapists, environmental services staff, and other essential contributors are vital to creating a cohesive, nurturing environment. their expertise elevates the care we provide and enriches discussions around standards of practice. i actively incorporate diverse perspectives, seeking out a multidisciplinary team that includes family members, various disciplines, and inpatient staff. i take great pride in our collaborative team, where we learn from and promote one another, cultivating an atmosphere of mutual respect and shared purpose. inspiration for growth dr. als was a positive energy in the field of newborn medicine. she supported engaging with the infant rather than simply offering treatment, at a time when the medical world often overlooked the individuality and humanity of newborns and failed to fully acknowledge the challenging path faced by the parents of an ill child. she moved us to strive for more. her perseverance acknowledged that rousing change can be challenging. her example continuously drives my commitment to carry forward her vision, ensuring that thoughtful, individualized care remains a priority, even when faced with barriers. her work moves me to continue my efforts, knowing that this approach holds transformative potential. she instilled the importance of continuous learning, reminding us that knowledge is ever evolving. her dedication to education stimulates me to seek growth through research, collaboration, and reflection. this commitment ensures that care practices advance alongside new discoveries, improving how we care for newborns and their families. dr. als placed great importance on reflective processing, urging us to thoughtfully consider every interaction. this approach shaped my connection between theory and practice to make intentional decisions. it also fostered a deeper understanding of how each moment fosters the emotional development of both the infant and their family, along with the professional course of myself and others. gratitude and aspiration reflecting on my journey, i feel immense gratitude for dr. heidelise als. her guidance provided inspiration, motivation, and unwavering support. she demonstrated that true leadership is about accompanying others and her belief in me served as a guiding light in both my professional and personal life. by promoting collaboration, amplifying the perspectives of often overlooked professionals, emphasizing the importance of reading and responding to infant behaviors, focusing on the significance of every detail, and committing to lifelong learning, i strive to fulfill and advance dr. als’ vision of thoughtful, intentional, and individualized care. “she supported engaging with the infant rather than simply offering treatment, at a time when the medical world often overlooked the individuality and humanity of newborns and failed to fully acknowledge the challenging path faced by the parents of an ill child.” 2025 • developmental observer • 5 carrying the vision forward: inspiring the future of developmental care together with the nidcap family and the nidcap federation international, i am dedicated to ensuring that her profound impact on newborn care and developmental practices flourishes. her legacy lives on in the countless lives she touched, reminding me daily of the difference one person can make in the world and that we can all do more. the path forward is rich with opportunities to expand the transformative principles of nidcap. future research must continue to evaluate the impact of nidcap on outcomes for infants and families, as well as quality improvement initiatives and feasibility studies in diverse healthcare settings. disseminating knowledge through impactful publications and engaging presentations will ensure that these principles reach a wider audience, inspiring others to adopt and innovate upon dr. als’ approach. additionally, increasing accessibility to nidcap training is crucial. efforts to create online resources, mentorship programs, and multidisciplinary collaborations can foster a global community of practitioners who are passionate about developmental care. by embracing continuous learning and reflection, and by championing advocacy and education, we can honor dr. als’ legacy and inspire the next generation of caregivers to amplify her vision. together, we can ensure that her teachings continue to transform lives, reminding all of us of the extraordinary power of compassion, intentionality, and individualized care. samantha butler phd attending, developmental and clinical psychologist director, inpatient neurodevelopment, cardiac neurodevelopmental program (cnp) director, national nidcap training center department of psychiatry & behavioral sciences, boston children’s hospital associate professor, psychiatry (psychology), harvard medical school, usa nidcap federation international board of directors and staff 2024 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwide childrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com monique oude reimer, rn nidcap trainer sophia nidcap & apib training center rotterdam, the netherlands charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com staff sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 6 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 6 • 2025 • developmental observer dr. heidelise als wrote …intuitive parenting must become conscious parenting when the child’s individuality portrays behaviors other than that which human expectation has prepared us for, in the thousands of years of evolution, to be good enough parents.1 dr. als understood that the greater an individual’s medical, physical, cognitive, and/or social/emotional challenges, the less likely that person can accommodate to their social or physical environment. these challenges may elevate the risk of adverse health outcomes and developmental issues, highlighting the critical importance of providing tailored care that supports both the individual and their family. this understanding informs the design and implementation of personalized care for premature and at-risk infants and their families. supportive care during hospitalization, as well as after discharge to home and community settings, promotes optimal well-being and positive outcomes. synactive model of behavioral organization – its origins in her work, dr. als drew from her personal parenting experiences as well as her clinical study of mother/infant relationships, including the study of infants with irritability and hypersensitivity. she saw the strength and importance of infant/ mother connections from the very beginning of their relationships. this awareness became even clearer through her early graduate school training, her mentorship and collaboration with t. berry brazelton, md, director of the child development unit at children’s hospital, as well as her use, training in, and adaptation of the brazelton newborn behavioral assessment scale. this is the foundation of the synactive model of behavioral organization and corresponding neurobehavioral observation and assessment tools, a caregiving intervention approach, and a training program. als and her child development unit colleagues, drs. brazelton, tronick and lester, wrote the seminal paper “toward a research instrument for the assessment of preterm infants’ behavior” describing the synactive model of behavioral organization.2 this developmental framework describes how humans’ continuous, dynamic interactions with their environments influence their behavior and development. the term “synactive” is from greek and latin origins meaning together (“syn”/greek) and action (“active”/latin). the “together in action” model was based on four principles of development: (1) phylogenetic and ontogenetic adaptedness (species adapt to their environments and are influenced by their environments allowing for adaptation); (2) continuous organism-environment transaction (organisms continuously interact with their surroundings, adjusting behaviors based on feedback received); (3) orthogenetic and syncretic (organism’s progressively develop as different abilities are integrated); and (4) dual antagonist integration (a tension exists between environmental protection and exploration). synthesizing these principles led to the theory that infants actively construct their own development within their physical and social environments and with the events that they experience. the newborn individualized developmental care and assessment program (nidcap)3 was designed to identify these adaptation strategies and as an earliest intervention approach for preterm and at-risk infants. the nidcap approach combines includes an infant observation instrument, a caregiving intervention model, and a training program. the synactive model: individuals, hospitals, and systems deborah buehler, phd west coast nidcap and apib training center, usa doi: 10.14434/do.v18i1.40899 adapted by buehler, d. (2024). 2025 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 2025 • developmental observer • 7 synactive model of organisms: individuals, hospitals, and systems in its broadest sense, the synactive model is applicable at many levels: the individual, the hospital (made of individuals, including premature and medically-at-risk infants), and the larger hospital and community system. individuals continuous dynamic interactions occur between individuals’ various layered subsystems of functioning (autonomic, motor, state, and attentional/interactive) and with their physical and social environments. this is a lifespan process occurring as individuals learn and evolve. early development sets the foundation for later development. initially, development occurs within the womb, with its protections and entrainments, and later within the extrauterine environment. for infants born prematurely, this includes the intensive care setting, with all the demands and challenges this environment presents at this critical time. these factors influence their unfolding development. premature and at-risk infants are actively shaping and being shaped by their environments. appreciating that growth and change occur within the context of interactions with the environment, offers the opportunity to understand the influences on, and implications for, stability, health and development. development implies both growth and change, unfolding initially through the disruption of previously established ways of functioning. new accomplishments become integrated by systems, realigning and supporting one another in new, adaptive ways. yet, for this realignment to occur, subsystem instability, disorganization, and de-synchrony may be experienced. lack of stability in one or more subsystems may lead to disorganization to the other systems with consequences for the infants’ efforts. the physical and social environment may thwart the subsystems’ efforts to re-balance, and/or it may provide positive steadiness and support for this re-alignment. these efforts enhance the developmental strivings toward the next steps. as an example, an infant lying on a flat mattress may become flaccid with arms and legs extended, show breathing pauses, compromised color and unsettled sleep. when this infant is gently positioned into side lying with the face protected from lights and calm, steady hand swaddling containments for shoulders, arms and head, the infant may begin to show relaxation. tone returns with tucked, flexed postures, hands rest by the mouth, breathing and color is regular and steady, and sleep becomes restful. infants continuously adjust their behaviors based on the feedback received from their surroundings. social and physical environmental support during periods of disorganization lead to subsystem rebalancing and steadiness. these adaptations provide positive behavioral support for the infants’ emerging developmental agenda. the synactive model of behavioral organization can be envisioned as a model of the developmental progression of individual human beings throughout their life span. each person experiences continuous, dynamic interactions with their physical and social environments which may support their strivings or may hamper their efforts both influencing experience and perhaps outcomes. the synactive model may be applied to nidcap’s professionals and supporters. every nidcap champion is a catalyst 2 4 5 8 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 8 • 2025 • developmental observer for positive change for infants, families, healthcare professionals, hospitals, and systems. inspiring, promoting, and guiding nidcap care are layers of the synactive system’s model. individuals who serve as nidcap mentors and supporters evolve and change as do the systems of which they are members. it is critical to seek out education, mentorship, and emotional support to ensure continuous, dynamic environmental interactions and to positively influence behavior, well-being, development, and effectiveness in others. hospitals/institutions the synactive model can be extended beyond the individual to institutions such as hospitals which are created and maintained to serve many individuals. each individual experiences their own autonomic, motor, state and attentional subsystem/environment interactions. in newborn and pediatric intensive and special care settings, infants, families, healthcare professionals, and the physical environment interact with one another. these interactions may be experienced as stabilizing and growth-promoting, or destabilizing, challenging and even, perhaps, detrimental. in the case of positive interaction among members of the system with common goals, the result may be a calmer more relaxed hospital unit; consistently steadier, healthier infants, ever more confident parents and families; and effective and satisfied healthcare professionals. conversely, difficult experiences from members of the hospital system, and/or the environment itself, may negatively impact the others. the results may be infants with breathing irregularities, difficulty feeding and growing, parents who are exhausted, worried, and sad, healthcare team members who feel challenged by high acuity and limited staffing, and a unit that is bright, loud and chaotic. any of these difficulties may lead to disruptions for the others. incorporating steady nurturance by families and knowledgeable healthcare professionals, within a supportive physical and social environment, provides for smooth moment to moment interactions and care. the ripple effects of positive experiences and interactions create synchrony and balance in the system which optimally change experiences and outcomes. the model and resources of the nidcap nursery program5 (add citation) describe this process of applying the synactive model to support optimal development and well-being. systems the synactive model may also be considered for the larger communities that hospitals serve and where individuals live. each of the layers: infants, families, hospital systems and entire communities are constantly evolving. they are interrelated and continually influence each other. the synactive model, in conjunction with the nidcap care it defines, has the extraordinary potential to change the course of lives and systems. nidcap has the potential to be adapted to other populations in healthcare, especially ones with patients and their families whose voices are not easily heard or needs understood (such as geriatric populations). moment-to-moment positive experiences support stability, developmental strivings, and ultimately optimal health and well-being for individuals, systems, and communities. these experiences can impact generations to come. the synactive model informs us that individuals (and the systems they are part of) are always changing. als wrote … each child actively shapes the adults and the environment around him or her, and that the adult, who becomes aware and has the emotional where-with-all to open earlier well-practiced ways, and see the child, becomes better for it.1 each new layer of being and of functioning, whether it is a person or a system, is built on the one before. cognitive flexibility is required to assess challenging situations and modify practices and policies to support change accordingly. every interaction and decision require the strength, capacity and confidence to be reflective about seeing, being shaped by, and shaping interactions and environments to help to bring out the best in others. when this happens, infants and families, and those who care for them, have the best chance for optimal functioning and well-being. references: 1. als, h. (2007). preparing to see and seeing. developmental observer, 1(2), 3-4, p.3. 2. als h, lester bm, tronick e, brazelton tb: toward a research instrument for the assessment of preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw (eds.), theory and research in behavioral pediatrics, vol. 1. new york: plenum, 35-63, 1982. 3. als h (1999). reading the premature infant. in goldson e (ed.) nurturing the premature infant: developmental interventions in the neonatal intensive care nursery. new york: oxford university press. 18-85. 4. buehler, d., kosta, s, als, h. (march 2018). nidcap federation international. 5. vittner d, butler s, lawhon g, buehler d. the newborn individualised developmental care and assessment program: a model of care for infants and families in hospital settings. acta paediatr. 2024 may 30. doi: 10.1111/apa.17300.. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 2025 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 caci e 1, warren i 2 1 fine neonatal uk, 2fine neonatal uk, university college london hospital from teaching to coaching. enhancing communication with parents in the neonatal unit using coaching skills doi:10.14434/do.v18i1.40857 introduction with the implementation of infant and family centred developmental care, healthcare professionals are called upon to support parents in becoming confident caregivers of their children in the neonatal units and upon discharge. traditional teaching methods, even when gentle and respectful, often focus on instruction and hierarchy. transitioning to a coaching approach, which has its foundation in active listening and person-centred theory can more effectively build parents' confidence and autonomy, leading to a stronger partnership between healthcare professionals and parents. parents, with the healthcare professional’s facilitation, will be able to find their own way of parenting and caring for their children rather than fitting in with professional expectations. this approach aligns with up-to-date research showing that communication with parents can have an impact on their wellbeing. aims develop a foundational educational programme to train healthcare professionals in fundamental coaching skills to: • communicate effectively with parents ensuring parents feel heard and treated with empathy. • promote a team-oriented dynamic between parents and healthcare professionals, fostering a strong partnership. • provide practical tools for navigating challenging situations, boosting healthcare professionals’ confidence. method the coaching education programme is built around three key coaching skills: active listening, open questioning, and how to share skills and knowledge with a coaching mindset. a pilot programme was delivered in a three-hour session as part of a nidcap/fine masterclass delivered online on the 5th of july 2024. it was highly interactive to give participants the opportunity to practise the skills in a safe space. we explored the idea of shifting from teaching to coaching through discussion around two specific scenarios and identified three key coaching skills to practice. for each skill we discussed the concept, engaged in practical application, and concluded with a group discussion. feedback collection from participants in the pilot is in progress. we sent a survey following the event to identify relevance and areas of improvement. this feedback will be used to shape the programme for a wider audience of healthcare professionals as part of a foundational infant family centred developmental care (ifcdc) education curriculum appropriate for nidcap. the programme is collaboratively designed by healthcare professionals and parents and delivered by a certified coach with lived experience in nicu, actively volunteering in a level 3 hospital and working with healthcare professionals. a second parent with nicu experience will also contribute, ensuring diverse perspectives. results fifteen participants (parents, nurses, occupational therapists, physiotherapists, and researchers) all with experience of foundational education for ifcdc attended the pilot. this online masterclass was highly interactive, and all participants were engaged and contributed greatly throughout the session. preliminary feedback from the participants at the end of the session showed a high interest in the topic and a palpable need for training in coaching skills to enhance communication between healthcare professionals and parents. participants supported moving to the next phase of the "from teaching to coaching" project. input from attendees at the pilot will help design questions to evaluate outcomes once the final format is in its trial phase. conclusion this approach highlights the potential benefits of promoting coaching skills for parents and healthcare professionals in the neonatal unit by improving communication and fostering a stronger partnership. this is crucial for parents’ and healthcare professionals’ wellbeing and should enhance parents’ confidence in caring for and bonding with their children, ultimately resulting in better outcomes for pre-term children and families. relevance to nidcap coaching skills could be part of the nidcap training skillset. 10 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 griffiths n1,2, webb a3, spence k4, popat h1,3, & sinclair l2 1 grace centre for newborn intensive care, sydney children’s hospital network, westmead, nsw, australia. 2university of technology sydney, ultimo, nsw, australia. 3university of sydney, camperdown, nsw, australia. 4western sydney university, parramatta, nsw, australia. using social network analysis to understand the effect of developmental care education doi:10.14434/do.v18i1.40862 background developmental care (dc) is an important moderator against stressors in the newborn intensive care unit (nicu) for infants and their families. however, the impact of varying levels of developmental care education on infants and parents' experiences and outcomes remains unclear. social network analysis (sna) is a methodology that provides researchers with valuable information to improve our understanding of complex relationships and offers better insights into where and how to intervene to improve outcomes.1 we utilised this approach to evaluate the impact of the levels of developmental care education of neonatal nurses in the surgical nicu (snicu). aim to explore: a) if exposure to nurses with differing levels of developmental care education influences parent perceptions of nurse support in the snicu. b) if caregiving by nicu nurses with differing levels of developmental care education influences infant behavioural and physiological responses. c) what infant and nurse components in the snicu influence nurse delivered caregiving. methods a prospective observational cohort study explored associations between parents’ perception of nurse support, nurses’ perception of infant behaviour, and infants’ responses during nurse-delivered caregiving (physiological and behavioural) with nurse dc education levels. additional variables included in the analysis were caregiving duration, infant surgery type (group), infant severity of illness variables, and gestational age. data were analysed through a multistep process of logistic regression and exploratory network analysis. results forty-five infants, parents and nurses participated in the study. exposure to care by nurses with no dc education (n=22) increased infant heart rate during caregiving (or: 5.09, 95% ci: -3.36, 13.56 p=0.67), increased the duration of caregiving minutes (p<0.001), and decreased parents’ perception of emotional support (or: -0.12, 95% ci: -0.23, -0.01, p=0.043). increased infant severity of illness scoring (n-tiss) (or 1.01, 95% ci:1.01, 1.04, p=0.040) and narcotic infusion was associated with non significant longer duration of caregiving. infants with congenital cardiac disease (chd) received significantly shorter caregiving duration (or: 0.58, 95% ci: 0.37, 0.01, p=0.002). longer caregiving duration was associated with a higher behavioural stress score (or: 2.10, 95% ci: 1.59, 2.59, p=<0.001). we observed that the proportion of care provided by dc-educated nurses (density of dc education network) correlated with infant surgery group (figure 1). specifically, infants needing surgery for chd received care from a greater number of dc educated nurses. (or: 0.10, 95% ci: 0.49, 0.80, p=0.038). the density of the nurse network (proportion of repeat nurse assignments) was associated with gestational age and surgery group. both preterm infants (or: 0.13, 95% ci: 0.25, 0.71, p=0.06) and infants needing surgery for respiratory/ oesophageal anomalies (or: 0.11, 95% ci: 0.35, 0.61, p=0.021) received a higher proportion of repeat nurse assignments. infant none fine 1 fine 2 nidcap dc education level figure 1: examples of social network analysis density of education network for infants during their snicu admission 2025 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion using a novel analysis methodology, we have demonstrated a relationship between nurse dc education levels, nurse caregiving practices, infant physiological responses, and parent perceptions of caregiving in the snicu. we identified several clinical care factors that influence the duration of caregiving, as well as infant characteristics that affect caregiving allocation. providing neonatal nurses with dc education will help to ensure dc is embedded into everyday clinical care, supporting parent and infant outcomes within and beyond the hospital admission. relevance to nidcap this research offers nidcap trainers, nidcap certified professionals, and neonatal clinician’s valuable insights into the complex relationships, social processes, and social structures that interact in the snicu, and influence nurse delivered care.1 it underscores the significance of developmental care education in highly technical settings. reference: 1. parnell jm, robinson jc. social network analysis: presenting an underused method for nursing research. journal of advanced nursing. 2018;74(6):1310-8. https://doi. org/10.1111/jan.13541 aims birth of a preterm infant is an unfortunate event and a critical situation for the family, which causes disenfranchised grief experiences in parents. acute grief reactions occur when the parents realize that the newborn infant is not their ideal or fantasy child. attention to this type of grief in parents and supporting them to interact with their infants is particularly important, specifically in mothers. therefore, this study aimed to investigate the effect of applying video interaction guidance on disenfranchised grief severity in mothers with preterm newborn infants. method the study used a quantitative interventional approach with a semi-experimental method. the sample consisted of seventy-two mothers with preterm infants in the newborn intensive care unit, with thirty-six mothers in both the control and intervention groups. participants were selected using the convenience sampling method and allocated to the groups using block randomization. the intervention group underwent a video interaction guide intervention along with routine care for one week. the researcher recorded 5 to 10 minutes of natural mother-child interaction on the first, third, and fifth days of the intervention. then, on the second, fourth, and sixth days, the researcher edited the videos to highlight the best moments, or "golden moments," of the mother-child interaction. on the third, fifth, and seventh days, the selected golden moments were shown to the mothers, who received positive feedback about their reactions and emotions. meanwhile, mothers in the control group only received routine care. both groups completed questionnaires for demographic information and prematurity grief before the intervention, immediately after, and one week later. the collected data was analyzed using spss version 25 and descriptive and inferential statistics such as the t-test, chi-square, fisher, mann-whitney, and repeated measures anova. results/findings this study revealed that before the intervention, two control and intervention groups were homogenous regarding demographic characteristics and grief severity scores. the result of the paired t-test showed that the grief score in the intervention group decreased profoundly immediately and one week after the intervention. furthermore, the independent t-test revealed that this difference between the two groups was statistically significant (p-value<0.001). also, in the intervention group, there was a statistically significant difference between the three measures of grief severity using repeated measures anova (p-value<0.001). conclusion the findings of the current research highlight the significant impact of utilizing video interaction guidance in alleviating the the transformative power of video interaction guidance in alleviating the disenfranchised grief of preterm infants’ mothers hasanpour m1, mokhtari m1, kazemnejad a2, zarkesh mr3 1pediatric and newborn intensive care nursing education department, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 2school of medical sciences, tarbiat modares university, tehran, iran. 3department of pediatrics, school of medicine, yas hospital complex, tehran university of medical sciences, tehran, iran. doi:10.14434/do.v18i1.40864 12 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 disenfranchised grief experienced by mothers of preterm infants. it underscores the crucial role of nurturing relationships between mothers and their infants for the newborn individualized developmental care and assessment program (nidcap) and infantand family-centered developmental care. as a result, researchers recommended that healthcare providers in neonatal intensive care units consider incorporating video interaction guidance as an effective method to support mothers of preterm infants, leading to decreased feelings of grief and fostering secure interaction and attachment between mother and infant. this enhanced, secure attachment and increased emotional bonding can contribute to healthy infant brain development, reduced parental stress, and healthy family development. relevance to nidcap infantand family-centered developmental care is a fundamental principle of the nidcap care model. in the nidcap model, mothers play a crucial role in developing the attention-interaction system and fostering healthy infant brain development. it is important to recognize that mothers of preterm infants, while caring for their live infants, require substantial emotional and empathetic support as they grieve for the loss of their ideal and imagined child. encouraging staff to utilize video interaction guidance in the nicu can significantly reduce the severity of mothers' grief and enhance mother-infant attachment. aims to explore the effect of an observation-based promotion of an oral feeding program (obpof) on shortening the time to achieve full oral feeding for very low birth weight infants (vlbwi). obpof refers to the evaluation of an infant's capacity to adapt to feeding using a dropper. upon successful adaptation, the subsequent step involves transitioning to feeding with a rubber nipple, during which the infant's adaptability should be closely observed before advancing to bottle feeding. once the infant has successfully adapted, the final transition will occur towards breastfeeding. method a prospective historical before and after control study design was used. sixty-three very low birth weight infants (vlbwi) were included from the tertiary newborn intensive care unit (nicu) of children’s hospital of fudan university at hainan from april 1, 2020, to november 30, 2021. the first stage (april 1, 2020, to november 30, 2020) was defined as the baseline stage (control group), followed by a four-month washout period (nurse training), and the second stage (april 1, 2021, to november 30, 2021) was defined as the intervention stage (experimental group). the obpof was applied in the experimental group (n = 29), and the traditional feeding program was used in the control group (n=34). the postmenstrual age (pma) at the time of attaining full oral feeding was compared. results during the implementation of obpof in the intervention group, the proportion of colostrum oral care increased significantly (100.0% vs 5.9%, p < 0.001), the proportion of routine use of pacifier before feeding increased significantly (100.0% vs 0%, p < 0.001), the proportion of oral stimulation increased significantly (100% vs 29.4%, p < 0.001), and the observation time before and after feeding also increased (8.6 ± 4.7 vs 0, p < 0.001). the pma of achieving full oral feeding was designed as the primary outcome, which decreased from 36.1 (± 1.0) w in experimental group to 35.0 (± 0.7) w in the control group, p < 0.001. pma of achieving full oral feeding was shortened by one week in the experimental group. other indicators were not statistically significant. conclusion the observation-based promotion of oral feeding program can shorten the time for vlbw infants to reach full oral feeding. it is recommended that nurses should use the observation based promotion of oral feeding program in vlbws in nicus. application of observation based promotion of oral feeding program in very low birth weight infants: a pilot study xuan y1,2, liang w2, guo c2, huang m2, lv t1, hu x1,2 1nursing department, children’s hospital of fudan university, shanghai, china. 2children’s hospital of fudan university at hainan, haikou, hainan province, china. doi:10.14434/do.v18i1.40881 2025 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 introduction trauma-informed developmental care (tidc) is essential to premature infants and their families hospitalized in the newborn intensive care unit (nicu). the core measures in tidc include five standards of care with skin-to-skin care (ssc) being central to their application.1 ssc has multiple benefits for the infant and its family 2 but it also creates a sense of safety and security to foster the development of trust and attachment, all in alignment with tidc principles.1 this is why the world health organisation (who) now recommends the practice of a minimum of 8-12h of ssc per day in the nicu.3 ssc is also considered to be the utmost co-regulation strategy to decrease stress and trauma as recommended by the newborn individualized developmental care assessment program (nidcap).4-5 nidcap aims to prevent complications in nicu and to maintain the intimate connection between parent and infant through collaborative observations of behavioural cues, individualized care plans and follow-up by nidcap professionals.5 aims/purpose our nicu is a 26 bed, open bay, level iii unit in montreal, within the french-speaking province of quebec, located in a socio-economically challenged area of montreal. about 50% of the patients are out born, sometimes from cities hundreds of miles away from montreal, which limits parental presence. in the process of becoming a nidcap training center unit and to foster parental presence and participation in care, we aimed to improve ssc session duration and frequency, as primary objectives for this project. however, as the training of our nidcap professionals advanced, a secondary objective imposed itself. the goal was to determine the effect of being followed by a nidcap professional in the context of the advanced practicum of nidcap training and subsequent follow-up after their certification, on the duration of ssc. over the last three years, we developed a new ssc multidisciplinary protocol, a ssc online training module, and ssc coaching sessions at the bedside for both parents and professionals. in addition, different tools to promote comfort and safety during ssc were purchased, such as zero gravity chairs, ssc wraps, as well as the use of leaflets and videos as parent resources. methods to monitor the progress, we documented parental presence, duration and frequency of ssc sessions, transfer techniques and positioning during ssc with bi-annual audits. those audits were developed and validated by a team of clinicians as part of our provincial community of neonatal nursing practice (cvp-neon@t) and are used in many nicus in quebec. the audits are always attended over a three-day period that includes both week and weekend days. results/findings over the span of three years, which included the covid pandemic, our primary objectives were met. the duration of ssc sessions doubled, increasing gradually and continuously from an average of 89 to 164 minutes (p=0.025). the frequency of ssc sessions tripled by our second audit, from 29% to 100% (p=0.025) and was steadily maintained in the following audits. this meant that every time a parent was present, and the infant was eligible for ssc, ssc occurred. this average duration of ssc increased to 258 minutes (p=0.025) when the infant was followed by a nidcap professional within an advanced practicum. some nidcap infants and their parents were having an average of 10 hours per day of ssc sessions. the impact of a developmental care skin-to-skin quality improvement project as part of our process of becoming a nidcap certified training center milette i, st-hilaire m, u-beaumier ca 1 neonatal intensive care unit, maisonneuve-rosemont hospital, montreal, quebec, canada doi:10/14434/do.v18i1.40883 relevance to nidcap individualized observations are the main element of the nidcap program, and are performed before, during and after the activities of feeding. professor heidelise als trained us how to do observations during caregiving. we combined these individualized observations in the promotion of oral feeding program and found that the very low birth weight infants achieved full oral feeding sooner, which promoted nursing care in our nicu. 14 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion our small sample (n=87, average=15 patients/audit & nidcap n=7, average 3.5 patients/audit) and non-statistically significant results are explained by the size of the nicu and we recently followed patients for the nidcap advanced practicum for a few months. despite this small sample, we were able to demonstrate that this project not only improved ssc duration and frequency in our nicu but also that nidcap professional follow-up almost doubled the duration of ssc sessions. relevance to nidcap these findings are relevant to nidcap, as they support previous similar findings in france.6 since parent-infant attachment is at the heart of nidcap, the importance of ssc as an essential strategy to foster behavioral cue understanding, co-regulation, and the principle of zero-separation cannot be understated. this study demonstrates that we can maximize this strategy with nidcap advanced practicum follow-up. references: 1. coughlin m, dewolfe t, fuller k. quality indicators for developmental care: a trauma informed conceptual model as an exemplar for change. in: kenner c, mcgrath j, editors. developmental care of newborn and infants: a guide for health care professionals nann national association of neonatal nurses. 3rd ed: wolters kluwer; p. 65-84.2003, isbn/ issn:9781975148393 2. conde-agudelo a, diaz-rossello jl. kangaroo mother care to reduce morbidity and mortality in low birthweight infants. cochrane database syst rev. 2016, (8):cd002771. doi: 10.1002/14651858.cd002771.pub4. 3. darmstadt gl, kirkwood b, gupta s, darmstadt gl, kirkwood b, gupta s, et al. who global position paper and implementation strategy on kangaroo mother care call for fundamental reorganisation of maternal infant care. the lancet. 2023, 401(10390):17513. doi: 10.1016/s0140-6736(23)01000-0 4. pierrat v, mitha a. contact peau-à-peau pour le nouveau-né prématuré ou de petit poids de naissance. in: sizun j, guillois b, tscherning c, kuhn p, thiriez g, editors. soisn de développement en période néonatale de la recherche à la pratique. chapitre 13. 2e ed. ed: lavoisier médecine sciences; 2022, p. 90-6. isbn : 978-2-257-20768-5 5. als h. theoretical persepective for developmentally supportive care. in: kenner c, mcgrath j, editors. developmental care of newborn and infants: a guide for health care professionals nann national association of neonatal nurses. 3rd ed: wolters kluwer; 2022, p. 35-64. isbn/issn: 9781975148393 6. pierrat v, coquelin a, cuttini m, khoshnood b, glorieux i, claris o, et al. (2016). translating neurodevelopmental care policies into practice: the experience of neonatal icus in france-the epipage-2 cohort study. pediatr crit care med. 17(10):957-67. doi: 10.1097/pcc.0000000000000914 aims the neonatal unit at university college london hospital is the only nidcap training centre in the united kingdom. we are committed to improving the collaboration between healthcare professionals and families. in 2023, we identified an opportunity for our multi-disciplinary team to work together to enhance this relationship by launching developmental care ward rounds. our quality improvement project (qip) had three main aims: 1. support parents as key nurturers 2. provide individualised care plans for infants and their families 3. ensure that staff feel valued as part of a wider interdisciplinary team methods key members of the neonatal team were identified as stakeholders for this project. these included an occupational therapist (nidcap trained), physiotherapist, speech and language therapist, psychotherapist, neonatal nurse and neonatal consultant with an interest in developmental care. the plan-dostudy-act (pdsa) model was used in project planning and execution. a questionnaire was sent to parents asking them for their views and recommendations. families were keen to participate and expressed a desire for an opportunity to share what they knew about their baby and to learn more about the different stages of their infant’s development. regular meetings were held to design a poster, parent leaflet and a bedside record sheet which includes an individualised care plan for the infant and family supported by the wider interdisciplinary team. the project was registered as a qip within maternity services. to ensure a clear and efficient referral and selection process, a standard operating procedure (sop) was developed and distributed to all staff. additionally, regular bedside education and engagement sessions were held with all members of the neonatal team. "this is the best ward round i have ever been a part of": implementing developmental care ward rounds in a tertiary neonatal unit in the uk. sammut a, lim am, jurikova m, furtado m, hicks ba. university college london hospitals, nhs foundation trust, london doi:10.14434/do.v18i1.40885 2025 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 results/ findings our developmental care ward rounds were launched in august 2023 and have been running regularly for the past ten months. two to three families are referred by staff and approached every alternate week. they are invited to participate and are supplied with information about what to expect during the ward round. this gives them time to prepare questions addressed to the interdisciplinary team. around 40 families have been seen so far. verbal feedback from families and staff involved has been very positive with some stating that it has been the best meeting they have ever had with professionals since they started their journey with us on the neonatal unit. a formal post-implementation questionnaire is currently being distributed to families and staff involved as part of a research project run by our chief research nurse intern. conclusion/relevance to nidcap our developmental care ward rounds focus on providing individualised care to the infants and families on our neonatal unit. they offer parents the opportunity to demonstrate and enhance their role as lifelong nurturers as they lead on discussions and care plans for their baby. it has also helped nidcap professionals identify which babies would benefit from a detailed observation. each bedside record sheet emphasises the infant’s unique behavioural communication and contains information on how to adapt their caregiving environment to make it more suitable to their needs. moreover, this open communication helps build trusting relationships between health professionals and families. staff involved have commented that it has helped advance their professional and personal growth and increased their job satisfaction. our commitment to improve ensures that we continue to make a positive impact on families. sponsor of the nfi dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2025. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 16 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 background parenthood can be overwhelming and anxiety generating for all parents including new ones. this is more pronounced for parents whose newborns are admitted to the newborn intensive care unit (nicu). in this environment, parents face complex information and are required to learn new skills to care for their infants, which can heighten their stress levels. parental education in the nicu may help prepare parents for home transition, boosting their confidence and knowledge and reducing their stress. aim/purpose to evaluate the effectiveness of education sessions in enhancing knowledge and attitude among parents of infants admitted to the nicu of a tertiary care center in lebanon. methods since august 2016, parent education sessions were held in the nicu as part of the unit's nidcap implementation process. parents’ readiness to care for their infants was assessed during their hospital stay and post-discharge. a parent education taskforce was formed to address parents' knowledge needs and readiness. the taskforce included a neonatologist, nidcap professionals and nicu nurses. baseline information was collected from ten nicu parents to identify topics of interest. presentations were prepared on kangaroo care, breastfeeding, infant behavior cues and discharge process. other topics were added later based on parents’ feedback. individual and group sessions were conducted, in person or online monthly and as needed. we took advantage of events’ celebrations like kangaroo care day, world prematurity day, and breastfeeding week. the sessions were interactive mostly when held in person. in january 2021, we began monitoring parental knowledge before and after each session. the knowledge questionnaire included ten true/false questions about the topic of discussion. open-ended questions were used to assess parents’ needs, expectations and attitudes toward infant care. results over the last three years, 105 parents attended the sessions. the average knowledge score increased from 79% to 92%, reflecting a 16% improvement. parents actively engaged in discussions, demonstrated keen interest in the content and acknowledged the sessions' significance for them. in the open-ended questions, parents reported that the educational sessions will change their misconceptions about breastfeeding and kangaroo care and equipped them with essential knowledge. one parent added ‘i expect to have a wider knowledge regarding the "premature baby phase" in general and also to get ready emotionally and physically to take my baby home’ and another parent mentioned ‘very valuable information to know about newborn care’. parents found the sessions particularly helpful when they addressed practical concerns such as storing breast milk, understanding their baby's behavior cues and post-discharge care. conclusion parent education sessions in the nicu play a pivotal role in nurturing a positive caregiving experience and promoting better health outcomes for both infants and parents. overall, the knowledge gained from these sessions empowered parents, giving them a stronger sense of assurance in managing their caregiving responsibilities and preparing them more effectively for the transition home. challenges remain in ensuring participation of all parents. future directions include leveraging new technologies such as mobile applications. additionally, involving former nicu parents to share their experience and perspectives during those sessions may be more welcoming. relevance to nidcap parental educational sessions align with the nidcap philosophy of promoting family-centered care and providing individualized support to parents, ensuring they are well prepared to care for their infants. education sessions improve knowledge and attitudes of parents in a newborn intensive care unit within a low-income country youness n, masri s, abdel nour g, charafeddine l american university of beirut, lebanon. doi:10.14434/do.v18i1.40888 2025 • developmental observer • 17 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 aims the fine program (family and infant neurodevelopmental education) is a very useful tool to improve personal practice in the application of the developmental centered care model and nidcap. in 2021, fine 2 training started in sant joan de déu hospital in barcelona. as part of this training, trainees were asked to answer a questionnaire on the practice of developmental care in their own centers. included is the ‘perception of a professional’s stress when performing a series of infant care and procedures. we aimed to analyze differences between the perception of the degree of self-stress by a group of professionals when performing usual procedures and care before and after their fine 2 training. methods scores reported by the 22 trainees from one center for each item in their workbook were analyzed. the different variables have a rating scale between 1 and 5 with 1 being minimum stress and 5 being maximum stress. from september 2021 to june 2024, 22 students (15 neonatal nurses, 2 nurse assistants and 5 neonatologists) were trained in fine 2 at our nidcap center. differences in average stress levels between both groups were compared using student's t-test. significance set at p <0.05. results average, standard deviation and statistical significance shown in bold of each item is shown in the table below. conclusion and relevance for nidcap our aim was to make professionals more aware of and sensitive to the stress caused to newborns by most of the routine care. in particular, cpap mask replacement and bottle milk feeding were the procedures in which statistically significant differences were observed in trainee’s perception before and after fine 2 training. analysis of changes in stress perception before and after fine 2 training riverola a, rodriguez n, moreno m, agut t, troyano mj, cervantes r, morillo a neonatal unit. sant joan de déu hospital. barcelona. spain doi: 10.14434/do.v18i1.40891 procedure professional’s stress before fine 2 professional’s stress after fine 2 n p diaper change 3.27+/1.2 3.5 +/-1.1 22 0.25 remove baby unwrapped from incubator 4 +/ 0.9 4.14+/0.8 21 0.37 remove baby wrapped from incubator 3.3 +/ 0.9 3.3+/1 22 0.56 weighing 3.3+/-1 3.1+/-0.8 21 0.71 mouth aspiration 2.9+/-1.3 3.3+/-1.3 22 0.15 peripheral intravenous access 3.6+/-0.9 3.8+/-0.8 21 0.16 eye cleaning 2.1+/-1.4 2.7+/-1.4 22 0.11 cpap mask placement 3.3+/-0.8 4+/-0.8 21 0.002 nasogastric tube insertion 2.5+/-0.9 2.9+/-1.2 21 0.1 bottle milk feeding 1.5+/-0.6 2.2+/-1.1 21 0.01 rop screening 4.1+/-1 4.1+/-1 19 0.46 thoracic or cardiac ultrasound 2.3+/-0.9 2.7+/-1 19 0.08 18 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 background retinopathy of prematurity (rop) examinations frequently occur in the newborn intensive care unit (nicu). ophthalmologists conduct these critical exams to screen, diagnose, and monitor the progression of rop, with intervention required in severe cases. these exams can be highly stressful and potentially traumatic for critically ill infants and distressing for caregivers to witness. effective management of the infants’ stress and discomfort during these procedures is crucial for their overall development and recovery. the author is part of an interdisciplinary team composed of ophthalmologists, developmental nurses, music therapists, child life specialists, and integrative care nurses. over the past four years, this team has developed, tested, and refined a tiered support model aimed at providing non-pharmacologic intervention at every stage of the rop exam: before, during and after. this model is grounded in five core measures of trauma-informed, age-appropriate care1 and als’ synactive theory of infant development,2 which emphasizes the importance of individualized and developmentally supportive care for preterm infants. aim the aim is to highlight the theoretical framework and evidence base underpinning the model’s design and implementation while providing a systematic overview of the model’s development history and its application in a level iv nicu in the united states. it will also include a discussion of the practical challenges and solutions encountered during the implementation process. methods the new model was initiated as a change in clinical practice. previously, the rop exam team consisted of an ophthalmologist, developmental nurse, and child life specialist, with support for the infant provided only during the examination due to time constraints and the volume of examinations. recurring negative outcomes, such as increased stress responses and delayed recovery in infants, prompted a critical review of the process. through a comprehensive literature review, feedback from bedside staff, and the integration of personal experiences, a support model offering pre-, intra-, and post-exam interventions was developed. the pre-exam phase, provided by a music therapist, includes measures such as swaddling, providing positive touch, and soft singing or humming. during the exam, a child life specialist employs strategies such as gentle touch, non-nutritive sucking, and containment while maintaining a quiet environment. post-exam care involves a holistic nurse providing comforting and grounding techniques. families are incorporated into each phase of the process as much as they are comfortable. after multiple iterations and testing, the final version was established as the new standard of care. the implementation process included staff education, protocol development, and ongoing evaluation to ensure adherence and effectiveness. results/findings informal data collection, consisting of conversations with staff and discussions among the rop team members indicated several positive outcomes. the new model resulted in increased family involvement and satisfaction, enhanced staff comfort and confidence during the exam process, and reduced negative clinical outcomes. conclusion the development and implementation of this support model underscore several key insights related to the nidcap model: the importance of recognizing and responding to infants’ behavioral cues, which is central to providing individualized, developmentally appropriate care. the impact of sensitive caregiving on clinical outcomes, demonstrate that non-pharmacological pain and stress management interventions can significantly reduce stress and improve recovery in preterm infants. the effective incorporation of families into the support process for stressful and painful procedures, highlights the role of parental involvement in promoting infant wellbeing. the benefits of interdisciplinary collaboration in navigating complex healthcare systems to minimize discomfort and agitation during procedures through non-pharmacological interventions. relevance to nidcap this model serves as a promising framework that can be adapted and implemented in other nicus to enhance the quality of care for vulnerable infants. references: 1. fuller k, dewolfe t, coughlin m. trauma informed developmentally supportive care, developmental observer, 2022, 15(1), https://doi.org/10.14434/do.v15i1.33788 2. als, h. (1982), toward a synactive theory of development: promise for the assessment and support of infant individuality. infant ment. health j., 3: 229-243. https://doi. org/10.1002/1097-0355(198224)3:4<229::aid-imhj2280030405>3.0.co;2-h exploring an interdisciplinary support model for rop exams in the nicu borzi a cincinnati children’s hospital medical center, cincinnati, oh usa doi: 10.14434/do.v18i1.40893 2025 • developmental observer • 19 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 introduction inviting parents to bring their lived experience to the education of neonatal healthcare professionals has proved to be both a revelation and an inspiration. since 2017 we have been developing active roles for parents as part of the family and infant neurodevelopmental education (fine) foundational education faculty. this began in hungary and romania with parents as organisers, co-coordinators and translators, but it soon became apparent that their lived experience and their passionate interest in improving service for children and families in neonatal units could be captured, extending their role to explore family experiences in a unique way. as they became familiar with the programme, they became very willing to take this on with confidence and we recognised the unique contribution their knowledge and experience brought to the validity of the training. in the last year and a half, we have recruited and prepared parents for the uk faculty. recruitment was through personal contacts and with the help of bliss, a national charity that supports neonatal units. our first recruits have brought a wealth of other professional skills to our team as well as their experience as parents. aims • to bring lived experience into the training space • to highlight the importance of communication with parents in the newborn intensive care unit (nicu) methods • parents who are not currently in the middle of the neonatal experience, who can participate and respond with knowledge and hindsight, are invited to be part of the faculty for foundational education programmes. • they provide continuous insights during training days, help to shape the curriculum, and with experience and guidance lead some of the topics. • they provide a space for discussion and reflection, and opportunity to ask questions in more intimate group workshops. • the programme is semi-scripted so that the boundaries of discussion are contained. • in recognition of the emotional energy that this work demands and the need to make it sustainable, professional psychological support is provided for parents who participate and, in addition, supervision and support from senior faculty is provided. results/findings • through the participation of parents as faculty several aspects of the foundational education programme have been changed and improved, including the kind of language used and introduction of coaching techniques. • faculty report on the impact that parents’ contributions have had on their way of teaching, how it has changed their perspective of their practice, and their perceptions of how the course has benefitted from the addition of this shared lived experience. • participants report that they highly value the powerful contribution of parents lived experience. • parents feel that by sharing their experience and the values of the fine programme they have an impact on improving the care for preterm babies and therefore their future outcome. furthermore, to be able to shape and improve the experience of parents on neonatal units gives the parent faculty members an enormous sense of fulfilment. conclusion this approach highlights the benefits of drawing on lived experience. it enhances the value of foundational education particularly when this experience is also drawn on to shape the way training is delivered. other ways in which this experience may be extended to help healthcare professionals gain skills in understanding and communicating with parents are being explored. relevance to nidcap this approach could be integrated into the nidcap training programme to deepen the understanding of the training participants with regards to the lived experience of the parents and carers. integrating parent lived experience into training programmes for healthcare professionals durm s1, warren i2 1parent faculty, fine neonatal uk. 2neonatology, university college london, uk. fine neonatal uk. doi: 10.14434/do.v18i1.40894 20 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 aim to describe the collaboration between the vall d’hebron-dr trueta nidcap training center and the catalan health system (ics) and how an expert advisory program was created to facilitate training across its six hospitals to improve outcomes for newborns and their families. methods and results year 2016 – start of collaboration. the padeics-nidcap expert group was created. padeics is an expert advisory program promoted jointly with the healthcare medical director of the six hospitals of the ics group (catalan institute of health) within the public health system, that care for over 270 very low birth weight babies every year in catalonia. the group consists of representatives of the administration, medical and nursing leaders of the units, nidcap professionals, other professionals promoting developmental care and family representatives from the “somprematurs” association. the main objective was to implement a newborn care model guided by nidcap. this is organized through quarterly meetings, leadership teams in each unit and the setting of annual objectives. during the 2016-2017 period, two very important actions were carried out: 1. a working day between families and professionals. during this meeting, nine areas of work are agreed upon, which focus on both training and the application of the model. 2. nidcap introductory 12-hour course, of theoretical and practical presentations and workshops. it is accredited in the catalan health system. a total of 380 professionals from the six hospitals participated. 2018-2023 – nidcap professional training • certified nidcap professionals in all six hospitals. • intermediate training, with an in-person course of 25 hours conducted in small groups. the pace is slow, the turnover of professionals matches our training capacity. • incorporating fine 2 into our training portfolio multiplies our training capacity. 2023 – start of the family inclusion program. the inclusion of families in neonatology (infa-neo) program started in girona, focusing on integrating families and providing individualized developmental care for high-risk babies, with a full-time nidcap nurse (montse reixach) and a part-time neonatologist (angela gregoraci). 2024 – more commitments from the administration. • commitment for 80% of professionals who work directly with babies and families to complete the fine 2 training, in all care shifts. • commitment to have a full-time nidcap professional position in all hospitals, responsible for training programs and implementing the care model. challenges • the difficulty of administrators to authorize expenses that are not equipment or pharmacological treatments. • the group does not include other hospitals that are not in the ics group. • the frequent turnover of healthcare professionals. strengths • the participation in the padeics program and the commitment of the medical and nursing managers of the units, which are part of the padeics-nidcap group. • having a training model (nidcap, fine) and implementation model (e.g. infa-neo) • collaboration with families and their associations (the president of somprematurs is part of the group). • the collaboration with other nidcap training centers such as “sant joan de déu” and “12 de octubre”. • the unconditional support of our senior nidcap master trainer, graciela basso and the nfi. nidcap: always a journey perapoch j1,2, camba f1,3, gregorari a1,2, anglès r4, and the padeics-nidcap group 1barcelona nidcap training center, catalonia, spain; 2hospital josep trueta, girona; 3hospital vall d’hebron, barcelona; 4ics hospitals healthcare medical director, barcelona padeics-nidcap group is formed by: solé e1, esqué g1, garcia j1, ortiz m1, bravo s1, duran a2, perapoch j2, reixach m2, simon n2, ezpeleta c3, ginovart g3, esteban md3, novell m3, tole d4, monterde l4, albújar m4, martinez mj4, ravés mm4, serrano r4, vernet s4, gros a5, ribes c5, quesada c5, camba f5, rodriguez r5, panisello c6, ribes c6, obando g6, rodriguez n6, arador a7, violant v8, farga e8. 1arnau de vilanova hospital, lleida; 2dr trueta hospital, girona; 3germans trias i pujol hospital, badalona; 4joan xxiii hospital, tarragona; 5vall d’hebron hospital, barcelona; 6verge de la cinta hospital, tortosa; 7padeics program assistant; 8university of barcelona; 9somprematurs association doi: 10.14434/do.v18i1.40895 2025 • developmental observer • 21 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion / relevance to nidcap collaboration with the administration is the way to consolidate the model in all ics hospitals. together with the sant joan de deu group of hospitals, we provide care for over 70% of very premature babies in the catalan health system. our goal is to improve communication with the administration to establish nidcap as a standardized model across all units in catalonia, and hopefully spain. collaboration with the administration facilitates conducting research studies on the implementation of the model. this collaboration also supports initiatives aimed at improving training skills. we believe that sharing our experience with other regions of the state can serve as an example and an encouragement to promote similar programs. the impact of neurodevelopmental observations of preterm infants such as those offered in the nidcap program is still debated. by supporting oral feeding development, nidcap observations could enhance breast milk feeding at discharge of very preterm infants. aim to describe breast milk feeding at discharge among very preterm infants according to the level of nidcap implementation in neonatal units. materials and methods using the french national population-based epipage-2 cohort, implementation of nidcap in each of 11 nidcap neonatal units was defined as the proportion of very preterm infants (< 32 weeks’ gestation) who had at least one nidcap observation during hospitalization. breast milk feeding at discharge -partial, breast/bottle exclusive, and breast only exclusivewas evaluated after adjustment on maternal and neonatal characteristics, and unit policies to support lactating mothers. results among 569 very preterm infants included, 14% (78/569) had at least one observation during hospitalization. implementation was defined as low in nine units and high in two units, with 7% (extremes: 0-13%) and 86% (75 and 100%) of infants having at least one observation, respectively. breast milk feeding at discharge was reported in 55% of infants. in neonatal units with low nidcap implementation vs high, we observed 25%/6% of partial breast milk feeding at discharge, 16%/24% of breast/bottle exclusive, and 14%/28% of breast only exclusive. high nidcap implementation was associated with higher proportions of exclusive only breastbreast milk feeding at discharge: adjusted odds ratio 4.72 (95% ci 2.79-7.99). conclusion/relevance for nidcap the level of nidcap implementation was associated with higher rates of breast milk feeding at discharge exclusively at breast. investment of professionals and families in very preterm infants’ observation could be an effective strategy to support exclusive breast milk feeding at discharge in this vulnerable population. nidcap implementation in neonatal units and breast milk feeding at discharge: the epipage-2 cohort study mitha a1,2, kana g1, marchand l1, lescure s3, pierrat v1,4 1université paris cité, epidemiology and statistics research center/cress, obstetrical, perinatal and pediatric epidemiology research team (epopé), inserm, inrae, f-75004 paris, france. 2division of clinical epidemiology, department of medicine solna, karolinska institutet, se17176 stockholm, sweden 3department of neonatal medicine, toulouse university hospital, toulouse, france 4department of neonatalogy, chi créteil, f-94028 créteil, france doi: 10.14434/do.v18i1.40896 22 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 aim a newborn intensive care unit (nicu) parent leader collaborates globally with clinical leaders, health system organizations, governments and industry to advocate for credible healthcare quality improvement. nicu parent leaders are deeply aware of the perspectives of patients and families from their own experiences to improve healthcare quality, safety and patient experience. by modeling empathetic listening, discernment & interpretation of patient and parent stories and strengths-based communication, nicu parent leaders build consensus through multistakeholder representation. methods theory & praxis research nicu parent leaders collaborate with organizations, communities and global societies in the following ways: 1. research partnerships: ensure research aligns with the needs of those most impacted, integrates patient and partner perspectives in decisions, and includes diverse community partners to reflect marginalized viewpoints. 2. quality improvement: enhances patient-centered care by systematically improving effectiveness, efficiency, safety, equity, and timeliness of healthcare services through data-driven evaluation and refinement of practices. 3. organizational development: supports leadership development, process improvement, change management, employee engagement, and strategic planning to foster efficiency, adaptability, and sustained growth. 4. readiness assessments: evaluates organizational preparedness for implementing changes, assessing infrastructure, staff skills, organizational culture, regulatory compliance, and impacts on patients and the community. 5. community building: uses administrative and community organizing skills to enhance healthcare organizations' ability to engage patients and families by emphasizing trust, inclusivity, and meaningful contribution from diverse and underrepresented voices. 6. health equity: promotes health equity by ensuring fair access to resources, eliminating disparities based on socioeconomic status, race, or ethnicity, and addressing social determinants of health to achieve optimal well-being for all. 7. event planning, conferences & summits: hosts a spectrum of engagement events, including councils, panels, collaboratives, and workshops. these platforms facilitate collaboration among patients, family caregivers, and healthcare professionals, encouraging diverse perspectives to drive healthcare improvement. 8. board of director leadership: oversees governance, finances, executive leadership, risk management, and stakeholder relations to ensure effective and ethical operation of the organization. 9. educates health communities: delivers health education, assess community needs, provide resource referrals, advocate for health equity, and evaluate program effectiveness to enhance community health outcomes. theoretical process development (results/findings in process) dr. heidelise als was a pioneering figure in the establishment of nidcap, introducing groundbreaking insights that revolutionized our understanding of infant development. central to her contributions was the synactive theory of infant development, emphasizing the crucial role of a robust theoretical framework in clinical effectiveness. dr. als unraveled the sensory, cognitive, and social capacities of infants, highlighting their continuous interaction with the environment. in a parallel manner, nicu parents navigate an unfamiliar environment with heightened vigilance, tasked with acquiring new skills. dr. als designed the model of the nidcap nursery to foster an environment of highly attuned care, supported by a community that envelops families, parents, and infants within the hospital setting. conclusion this abstract proposes leveraging the model of the nidcap nursery in collaboration with nicu parent leaders to enhance healthcare quality, safety, and patient experience. as nicu parent leaders undergo personal and professional growth, including interdisciplinary collaboration and leadership skills development, they bring valuable insights and dedication to the organizational development of nicus. relevance to nidcap effective nicu parent leaders have the transformative potential to apply the principles of the model of the nidcap nursery across multiple facets of the healthcare ecosystem. through empathetic listening, discernment, and strengthspartnering with the nicu parent leader reginato cascamo, k courageous steps; gonzaga university, usa doi:10.14434/do.v18i1.40897 2025 • developmental observer • 23 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 based communication rooted in patient and parent narratives, they collaborate to enhance the well-being of infants, families, healthcare professionals, and hospital communities alike. by nurturing a reciprocal care approach, nicu parent leaders contribute to the restoration and improvement of healthcare systems that once supported them during their own critical journeys. background kangaroo mother care (kmc) is an integral part of neonatal care, with its benefits to babies and families well documented. the position in which the parent holds her baby in kc, is mostly determined by maternal preference in the newborn intensive care unit (nicu). this study aimed to assess whether there is any differences to the babies cerebral oxygen levels, based on the two usual maternal positioning practiced in nicu at cork university maternity hospital (cumh) (30° or 60° incline position) and if either maternal position is more optimal for performing kmc. methods single centre cross-over randomised controlled trial in a tertiary newborn intensive care unit. infants with a minimum corrected gestational age of 28 weeks and minimum 600 grams were included. participants were randomly assigned to commence kmc, with their mother laying at either a 30° or 60° angle. the primary outcome measure was the median cerebral near-infrared spectroscopy (nirs) values between the two positional angles. near-infrared spectroscopy (nirs) oxygen saturation monitoring was chosen as it provides non-invasive, real time, continuous, tissue specific measurements of cerebral oxygen saturation. nirs monitoring can detect cerebral hypoxia, even when other monitors do not show signs of clinical deterioration.1 secondary outcomes were median infant peripheral saturations, median infant heart rates and numbers of significant bradycardia or desaturation episodes during kmc intervention. the results were analysed using the non-parametric wilcoxon signed rank test. results twenty participants were included in the final analysis: median gestational age (ga) at birth was 28+1 weeks (range: 23+2 to 32+6 weeks) and median birth weight was 0.985kg (range: 0.620kg to 2kg). there were no statistically significant differences (p = 0.810) between the median nirs values at 30° (median rso2 = 67.5, iqr = 58.3 – 73.8) and 60° (median rso2 = 68, iqr = 60.5 – 76). there were no statistically significant difference in the median peripheral saturations (p = 1), or median heart rates (p = 0.662) between infants held skin-toskin at 30° or 60° positions. conclusion results indicate that maternal positioning at a 30° or 60° incline did not have a significant impact on cerebral oxygenation values in very preterm infants furthermore either position was associated with the infant’s clinical stability. evidence robustly supports implementation of kmc to improve outcomes for the infant and families. relevance for nidcap as nidcap professionals, when supporting the families in our care with kmc we have to ensure our recommendations are researched based and supporting the best possible outcomes for the infant. reference: 1. vesoulis za, sharp dp, lalos n, swofford dp, chock vy. cerebral near-infrared spectroscopy use in neonates: current perspectives. research and reports in neonatology. 2024;14:8595. https://doi.org/10.2147/rrn.s408536 investigating the effect of held position during kangaroo care on physiological parameters of premature infants: a randomised controlled trial vaughan s1, murphy s1, stapleton i1,2, walsh bh1,2, natchimuthu k1, dempsey e 1,2 1department of neonatology, cork university maternity hospital, cork, ireland 2irish centre for maternal and child health research (infant) centre, cork university maternity hospital, cork, ireland doi:10.14434/do.v18i1.40898 24 • 2025 • developmental observer behind the scenes: toulouse, france kaye spence am, mn, facnn w hen i found out that the nidcap trainers meeting would be held in toulouse, france, i was thrilled. this area of europe has always fascinated me with its layers of history, beauty, and unmistakable ambiance. so uniquely, so unmistakably french. arriving a few days before the meeting, i seized the opportunity to explore toulouse which is famously known as 'la ville rose' for its rose-hued brick buildings. it is equally celebrated for its rich gastronomy. i was lucky to sample some of the delights. toulouse’s storied past unfolded in its museums and churches. once the visigothic capital, later the county of toulouse's heart, the city resisted 13th-century anti-heretic crusades tied to the cathars. its parliament, established in 1420, governed languedoc until the french revolution. history came alive here, vividly preserved and powerfully resonant. with every turn down its winding lanes, i found scenes worthy of a photograph, each capturing the city’s timeless character. i was particularly struck by how well-preserved its historic buildings remain. i walked over 15,000 steps exploring the riverside paths, churches, and museums. everywhere i went, locals were warm and welcoming. one of the highlights of my visit was the couvent des jacobins. walking through its chapels and cloisters, i felt transported to an era of devotion and defiance. the exhibition on the cathars was particularly haunting— its vivid depictions of faith and persecution left me reflecting on the resilience of beliefs in the face of overwhelming odds. as i prepared for the nidcap conference on 'systems integration at local, regional, and national levels,' i refllected on toulouse’s journey through history. from its origins as a regional medieval hub to its role as a cornerstone of the occitanie region, and finally its integration into the broader map of france, toulouse exemplifies the dynamic interplay between local character, regional collaboration, and national unity. it stands as a powerful metaphor for the potential of systems integration to honour individuality while fostering collective strength. n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 title sponsors of the 35th nidcap trainers meeting 2025 • developmental observer • 25 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 2025 • developmental observer • 25 n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 meeting attendees 26 • 2025 • developmental observer observing and learning nidcap care in the moment im ag e us ed w ith p er m iss io n (in person and online) 2025 • developmental observer • 27 l ’association nidcap france a été créée en 2013 en tant que "french chapter" autorisé par la nfi, sous l’impulsion du pr sizun et des membres du premier centre de formation nidcap français de brest. l’association a pour but de coordonner et dynamiser la recherche, le développement et la diffusion du nidcap sur le territoire francophone. elle soutient l’organisation des journées nidcap francophones, qui se déroulent chaque année dans une des unités françaises ou belges formées au nidcap. un site internet et la création de comptes sur les réseaux sociaux (facebook, twitter) ont également été créés rapidement. a partir de 2022, avec la formation de nouvelles formatrices nidcap belges et françaises, l’avenir de l’association nidcap france est discuté, afin de faciliter les échanges entre les centres de formation nidcap et de dynamiser le partage d’informations auprès du public francophone. les statuts de l’association sont révisés et le nom nidcap france est modifié pour nidcap francophone. les sièges du conseil d’administration sont également ouverts aux représentants de parents (association sos préma). des professionnels de tous les centres de formation nidcap en france (brest, toulouse) et en belgique (bruxelles), mais également des représentants des futurs centres de formation nidcap (valenciennes, saint-brieuc et grenoble), des professionnels certifiés et adhérents à la nfi, sont élus membres du nouveau bureau ou présents au conseil d’administration en 2022. le bureau actuel de l’association nidcap francophone est composé de: sandra lescure, md nidcap trainer, toulouse, présidente aurélie guillou, rn, nidcap trainer, saint-brieuc, co-présidente isabelle olivard, rn, nidcap professionnal and nbo trainer, brest, trésorière sylvie minguy, rn, nidcap trainer, brest, co-trésorière céline prout, rn, nidcap trainer, toulouse, secrétaire marie-cécile andro-garçon, md, nidcap professionnal, saint-brieuc, co-secrétaire l’association continue de soutenir les missions pour lesquelles elle a été créée il y a 12 ans, et réfléchit à de nouvelles perspectives, en se structurant. elle a comme ambition de développer plusieurs commissions : commission pédagogique pour soutenir la formation et la diffusion du nidcap, en favorisant la coordination entre les différents centres de formation nidcap francophones afin de recueillir des indicateurs d’implantations des programmes de soins. un des buts est de pouvoir partager entre formatrices du matériel-support de formation. un autre est également de coordonner les formations au sein du territoire avec la présence de plusieurs centres de formation. l’association permet également aux formatrices de se soutenir mutuellement et de partager leurs expériences de formation. enfin, pour l’année 2025, un des objectifs est d’organiser des webinaires en français sur la thématique de l’observation, afin de soutenir les certifiés nidcap des différentes unités de néonatologie francophones. commission scientifique pour travailler avec les équipes organisatrices à l’élaboration du programme des journées nidcap francophones (jfn). l’autre objectif est également de dynamiser la recherche sur le nidcap. actuellement cette commission travaille sous l’impulsion de véronique pierrat à l’évaluation de l’impact de l’implantation des programmes fine 2 et cle dans les différentes unités de soins. commission communication pour diffuser des informations fiables sur le nidcap, les soins de développement centrés sur l’enfant et sa famille, en créant un nouveau site web qui est en cours d’élaboration, l’initial ayant été fermé, qui permettra au public francophone d’avoir des informations locales sur la diffusion du nidcap en france et en belgique, la traduction en français de certains articles importants ou la diffusion des informations apportées par la nfi. ce site sera relié au site de la nfi. cette commission réfléchit également à la présence de nidcap francophone sur les réseaux sociaux pour pouvoir atteindre un plus large et plus jeune public. les membres de l’association se réunissent par zoom de façon régulière et en fonction des missions et objectifs fixés. depuis 2022, il y a eu environ quatre à cinq réunions par an. l’assemblée doi :10.14434/do.v18i1.40905 perspectives mondiales des soins de développement nidcap francophones aurélie guillou and sandra lescure, nidcap trainers l’association nidcap france a été créée en 2013 en tant que « french chapter » autorisé par la nfi, sous l’impulsion du pr sizun et des membres du premier centre de formation nidcap français de brest. 28 • 2025 • developmental observer générale se fait chaque année lors des journées nidcap francophone. les membres du comité d’administration sont élus tous les trois ans. la prochaine élection aura lieu en 2025. lors des dernières journées nidcap francophones en 2024, à toulouse, il nous est apparu opportun de faire un état des lieux de l’implantation du nidcap en france et en belgique. un questionnaire a été envoyé à toutes les équipes formées au fine 2 ou au nidcap (72 établissements de santé sollicités (63 français et 9 belges)/ taux de réponse à 69,4%), et les résultats préliminaires ont été présentés lors des journées. la perspective est de monitorer plus précisément l’implantation des sdcef, du nidcap sur nos territoires francophones. en france, il y a actuellement 20 unités de néonatologie (nicu) avec des certifiés nidcap dont certaines ont aussi des certifiés fine. on compte également 32 autres unités avec des certifiés fine 2. en belgique, le nidcap est implanté dans 17 des 19 nicu. dans les néonatologies sans soins intensifs, la moitié sont formées au programme cle ou fine 2. les journées nidcap francophones connaissent chaque année un franc succès. en 2024 étant donné l’organisation du 35ème trainers meeting sur toulouse, il a été proposé d’y accoler les 12èmes jfn. le but était de permettre aux certifiés nidcap/fine ou cle francophones de côtoyer les acteurs du nidcap du monde entier. ainsi la dernière journée du trainers meeting était commune avec les jfn qui se sont poursuivies par une journée uniquement francophone, où les congressistes ont pu participer à plusieurs ateliers pour échanger sur leurs différentes pratiques. ils ont pu également assister à la rubrique « partage d’expériences » où chaque unité peut venir présenter les avancés dans son équipe concernant les soins de développement. la thématique était « soutenir l’implantation du nidcap dans les différentes unités de soins ». 150 personnes étaient présentes pour ces journées francophones. jusqu’à présent, nous limitions la présence à 3 ou 4 personnes par unité de néonatologie afin de permettre des ateliers et des échanges entre participants. ces journées sont également ponctuées d’une remise des diplômes des certifiés de l’année ainsi que d’une soirée dansante qui permet de partager dans la convivialité. les prochaines jfn ont lieu à montpellier les 25 et 26 septembre 2025 et ont pour thématique : "construire une unité de néonatologie ne 2025 : architecture et bien-être soigné/soignant ". en 2025, l’association nidcap francophone souhaite s’ouvrir au québec et se propose d’intégrer dans son comité d’administration isabelle milette qui est en cours de formation pour devenir formatrice nidcap à montréal. en bas de gauche à droite: fredérique berne-audeoud, pédiatre, formatrice nidcap en formation, grenoble; jacques sizun, professeur emérite université toulouse, directeur retraité du centre de formation nidcap de toulouse; sandra lescure, pédiatre, formatrice nidcap et directrice du centre de formation nidcap de toulouse; céline prout, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de toulouse; nathalie ratynski, pédiatre, formatrice nidcap retraitée, centre de formation nidcap de toulouse; delphine druart, infirmière puéricultrice, formatrice nidcap et apib, centre de formation nidcap de bruxelles en haut de gauche à droite: marie-cécile andro-garçon, pédiatre professionnelle nidcap, directrice du centre de formation nidcap de saint-brieuc; aurélie guillou, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de saint-brieuc; véronique pierrat, pédiatre professionnelle nidcap, chercheure inserm équipe epopé-inserm, paris; isabelle glorieux, pédiatre professionnelle nidcap, toulouse; sylvie minguy, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de brest; peggy laurant, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de valenciennes; juliette barois, pédiatre professionnelle nidcap, directrice du centre de formation nidcap de valenciennes; inge van herreweghe, pédiatre professionnelle nidcap, directrice du centre de formation nidcap debruxelles 2025 • developmental observer • 29 the association aims to coordinate and energize nidcap research, development and dissemination in the french speaking world. it supports the organization of a nidcap french-speaking meeting, held each year in one of the french or belgian nidcap training centers. a website and social network accounts (facebook, twitter) have also been set up. from 2022, with the training of new belgian and french nidcap trainers, the future of the nidcap france association is currently being discussed, to facilitate exchanges between nidcap training centers and boost information sharing with the french-speaking public. the associative statutes have been revised, and the name nidcap france changed to nidcap francophone. board seats have also been opened up to parents' representatives (sos préma association). professionals from all nidcap training centers in france (brest, toulouse) and belgium (brussels), as well as representatives of the new nidcap training centers (valenciennes, saint-brieuc and grenoble), nidcap certified professionals and nfi members, were elected to the new executive committee or the board of directors in 2022. the current board of the nidcap francophone association is made up of: sandra lescure, md nidcap trainer, toulouse, president aurélie guillou, rn, nidcap trainer, saint-brieuc, vice-president isabelle olivard, rn, nidcap professional and nbo trainer, brest, treasurer sylvie minguy, rn, nidcap trainer, brest, co-treasurer céline prout, rn, nidcap trainer, toulouse, secretary marie-cécile andro-garçon, md, nidcap professional, saint-brieuc, co-secretary the association continues to support the missions which were created 12 years ago, and and is also bringing new perspectives to its restructuring plans. its goals include the development of several commissions: pedagogical commission to support nidcap training and dissemination, by promoting coordination between the various french-speaking nidcap training centers in order to collect indicators of the implementation of the program. one aim is to enable trainers to share training materials. another is to coordinate training within the region, given the presence of several training centers. the association also enables trainers to support each other and share their training experiences. finally, for the year 2025, one of the objectives is to organize webinars in french on the theme of observation, in order to support nidcap professionals from different french-speaking neonatology units. scientific commission to work with the organizing teams to draw up the program for the nidcap french-speaking meeting (jfn). another objective is to boost nidcap research. this commission is currently working, under the direction of véronique pierrat, on assessing the impact of implementing the fine 2 and cle programs in the different care units. communication commission to disseminate reliable information on nidcap, infant and family centered developmental care, by creating a new website (currently under development, the initial one having been closed) which will provide the french-speaking public with local information on the spread of nidcap in france and belgium, the translation into french of certain important articles or the dissemination of information provided by the nfi. this site will be linked to the nfi site. the committee is also considering the possibility of putting nidcap francophone on social networks to reach a wider, younger audience. the members of the association meet regularly via zoom, according to their missions and objectives. since 2022, there have been about four to five meetings each year. the ordinary annual general meeting is held each year during the nidcap french-speaking meeting. board members are elected every three years. the next election will take place in 2025. during the last nidcap french-speaking meeting in 2024, in toulouse, it seemed appropriate to take stock of nidcap implementation in france and belgium. a questionnaire was sent to all teams trained in fine 2 or nidcap (72 health establishments were contacted (63 french and 9 belgian) the response rate was 69.4%), and the preliminary results were presented at the meeting. the aim is to monitor the implementation of doi: 10.14434/do.v18i1.40904 global perspective on developmental care nidcap francophone aurélie guillou and sandra lescure, nidcap trainers translated from the original french by aurelie guillou the nidcap france association was created in 2013 as a french chapter authorized by the nidcap federation international (nfi), under the leadership of professor jacques sizun and members of the first french nidcap training center in brest. 30 • 2025 • developmental observer ifcdc and nidcap in french-speaking units more closely. in france, there are currently 20 neonatal units (nicus) with nidcap professionals, some of whom also have fine certification. in addition, there are 32 units with fine 2 certification. in belgium, nidcap is implemented in 17 of the 19 nicus. in newborn units without intensive care, half are trained in the cle or fine 2 program. the nidcap french-speaking meetings are a great success every year. in 2024, given that the 35th trainers meeting would be held in toulouse, it was proposed that the 12th jfn should be held in conjunction with it. the aim was to enable french-speaking nidcap/fine or cle certifiers to rub shoulders with nidcap players from all over the world. as a result, the last day of the ntm was held in conjunction with the jfn, which continued with a day devoted exclusively to the french-speaking world, where delegates were able to take part in a number of workshops to share their different practices. they were also able to take part in the “sharing experiences” section, where each unit could present the advances made by its team in developmental care. the theme was “supporting the implementation of nidcap in different care units”. one hundred and fifty people attended the nidcap french-speaking meeting. until now, we have had limited attendance of three or four persons per neonatal unit, to enable workshops and exchanges between participants. these days are also punctuated by the presentation of diplomas to the year's recipients, and an evening dance to share in the conviviality. the next jfn will take place in montpellier on september 25 and 26, 2025, with the theme: “building a neonatology unit in 2025: architecture and well-being of caretakers”. in 2025, the nidcap francophone association plans to open up to quebec, and proposes to integrate isabelle milette, who is currently training to become a nidcap trainer in montreal, into its board. bottom left to right: fredérique berne-audeoud, md, nidcap trainer in training, grenoble; jacques sizun, md, professor emeritus university of toulouse, director retired of toulouse nidcap training center; sandra lescure, md, nidcap trainer, director of toulouse nidcap training center; céline prout, rn, nidcap trainer, toulouse nidcap training center; nathalie ratynski, md, nidcap trainer retired, toulouse nidcap training center; delphine druart, rn, nidcap and apib trainer, brussels nidcap training center top left to right: marie-cécile andro-garçon, md nidcap professional, director of saint-brieuc nidcap training center; aurélie guillou, rn, nidcap trainer, saint-brieuc nidcap training center; véronique pierrat, md, nidcap professional, researcher inserm équipe epopéinserm, paris; isabelle glorieux, md, nidcap professional, toulouse; sylvie minguy, rn, nidcap trainer, brest nidcap training center; peggy laurant, rn, nidcap trainer, valenciennes nidcap training center; juliette barois, md, nidcap professional, director of valenciennes nidcap training center; inge van herreweghe, md, nidcap professional, director of brussels nidcap training center 2025 • developmental observer • 31 it all began in the city of valenciennes, in the north of france. after the construction of a new hospital complex, which was completed before the second world war, a new maternity ward was built in 1960. as a tribute to the principality of monaco, which was a sponsor of the city of valenciennes during the first world war, the ward was inaugurated in 1980 by the mother of prince rainier iii and was named the "monaco" maternity ward. the neonatology department was located away from the maternity ward, with care rooms being large open spaces surrounded by bay windows, offering little space for parents. dr. catherine zaoui, who was leading the unit at the time, was eager to explore other care practices and philosophies. a trip to brest was organized to meet drs. nathalie ratynski and jacques sizun, pioneers in introducing nidcap (newborn individualized developmental care and assessment program) in france. this marked the beginning of a significant transformation, but it had to be achieved within the existing architecture, which posed challenges due to much noise and light. despite these limitations, the team’s motivation was strong, and gradually, developmental care techniques were introduced, driven by a dynamic and caring team. in february 2005, the neonatology department moved into new, purpose-built facilities designed to support the implementation of developmental care and nidcap. it was equipped with features such as centralized monitoring, parent-child rooms, reception lounges, a kitchenette, and accommodation for parents living far away. the care team, deeply invested in the project, began receiving training, starting with the certification of two pediatricians and two pediatric nurses under the guidance of dr. nathalie ratynski from the brest nidcap training center. the department was reorganized to align with this philosophy, introducing training on breastfeeding and establishing various working groups promoting breastfeeding, preparing parents for discharge, reducing noise disturbances, encouraging early interactions such as skin-toskin contact, music, reading, and pain management, as well as a steering committee in collaboration with parents. over several years, nidcap training continued, resulting in eight nurses and five pediatricians being certified. n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e valenciennes nidcap training center, france so much progress made! juliette guilliot, head pediatrician and peggy laurant, pediatric nurse and nidcap trainer doi:10.14434/do.v18i1.40901 monaco neonatal hospital 32 • 2025 • developmental observer as part of the ongoing nidcap implementation, a dedicated coordinator position was created in 2011. the number of nidcap observations significantly increased. two years later, the team committed to obtaining nidcap certification. at that time, only one service in france, the neonatology department at brest university hospital, was certified. in 2016, valenciennes achieved this certification, recognizing the dedication and hard work of the entire team. efforts to promote breastfeeding also bore fruit, with the maternity and neonatology departments receiving the ihab (baby-friendly hospital initiative) accreditation in 2011 and maintaining it through recertifications in 2015, 2019, and 2024. the department now has two lactation consultant positions (one in maternity and one in neonatology), a nidcap coordinator role in neonatology (with occasional support from other certified pediatric nurses or pediatricians), and a care coordinator role during weekdays. shortly after the nidcap certification, a local branch of the parent national association "sos préma" was established in the department. mme wallet, a volunteer mother from the association, regularly visits the department and organizes activities for families. over the years, the department’s layout has been continually reimagined. the parents’ kitchen was completely renovated, double beds for parents were installed in three neonatal unit rooms, and the staff kitchen and service reception area were redecorated with the help of the "bricos du cœur" association. in 2020, inspired by the national "first 1000 days" project, the regional perinatal network (orehane) initiated a project, financially supported by the hauts-de-france regional health agency, to facilitate the implementation of developmental care in neonatal units by offering accessible training programs. this marked a pioneering experiment of such scale in france. peggy laurant, a pediatric nurse from valenciennes, began her nidcap trainer training in 2021, dedicating 50% of her time, supported by valenciennes hospital. the training was led by delphine druart from chu saint pierre in brussels, under the guidance of agneta kleberg and deborah buehler for the apib (assessment of preterm infants’ behavior). this ambitious training process expanded across the region, with peggy laurant conducting numerous developmental care initiation sessions, training 568 individuals from june 2021 to october 2024 (with additional sessions led by stéphanie giers, a certified nidcap professional from roubaix hospital, in 2024). as part of her nidcap trainer training, peggy certified two neonatal nurses from valenciennes. in 2023, fine 2 (family and infant neurodevelopmental education) training sessions began in valenciennes before expanding regionally, with eight professionals certified in 2024 and 12 in training. at the beginning of 2024, peggy laurant completed her nidcap trainer certification and apib professional certification. the valenciennes nidcap training center was then established, led by dr. sabine réthoré (nidcap certified pediatrician) and co-led by dr. juliette guilliot (head pediatrician, nidcap professional) and peggy laurant as a nidcap trainer. the opening of the valenciennes nidcap training center was the culmination of a long process, built on trust between leadership and department heads, but it also marked the beginning of a new chapter for the neonatology department in valenciennes. to be continued... english translation with assistance of ai and kiki remont. a common room in the maternity ward the valenciennes nidcap team 2025 • developmental observer • 33 n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e valenciennes nidcap training center, france tant de chemin parcouru! juliette guilliot, pédiatre en chef et peggy laurant, infirmière pédiatrique et formatrice nidcap c'est dans la ville de valenciennes, dans le nord de la france que tout commence. après la construction d’un nouveau complexe hospitalier qui s’est achevé avant la seconde guerre mondiale, c’est en 1960 que la nouvelle maternité fut bâtie. en hommage à la principauté de monaco, marraine de la ville de valenciennes durant la première guerre mondiale, elle fut inaugurée en 1980 par la mère du prince rainier iii et devint alors la maternité "monaco". le service de néonatologie était éloigné de la maternité, les salles de soin étaient de grands espaces ouverts entourés de baies vitrées, ne disposant que de peu de place pour les parents. le docteur catherine zaoui qui dirigeait alors l’unité était curieuse de découvrir d’autres pratiques et philosophie de soins. un voyage à brest était alors organisé, à la rencontre des dr nathalie ratynski et jacques sizun, pionniers de l’implantation du nidcap en france. le début d’un grand changement s’annonçait mais il a fallu faire avec les moyens que nous disposions c’est-à-dire cette architecture ! avec beaucoup de bruit, de lumière…la motivation était bien présente et progressivement quelques techniques de soins de développement sont mises en place, menées par une équipe dynamique et bienveillante. c’est en février 2005 que le service de néonatologie déménage dans de magnifiques locaux conçus dans l’objectif d’implantation des soins de développement et du nidcap avec des équipements adaptés comme un monitorage central, des chambres parents-enfants, des salons d’accueil, une tisanerie et une chambre pour des parents habitant loin. la formation de l’équipe soignante alors très investie dans le projet commence par la certification de 2 pédiatres et de 2 infirmières puéricultrices, formées par le docteur nathalie ratynski du centre de formation de brest. l’aménagement du service est repensé dans cette philosophie, des formations sur l’allaitement maternel sont déployées et divers groupes de travail se mettent en place (promotion de l ’allaitement maternel; accompagnement des parents vers la sortie ; lutte contre les nuisances sonores ; promotion des interactions précoces, du peau à peau, la musique, la lecture ; la prise en charge de la douleur…) ainsi que la mise en place d’un comité de pilotage en collaboration avec les parents. les formations nidcap se poursuivent durant plusieurs années avec au total 8 infirmières et 5 pédiatres formés. doi : 10.14434/do.v18i1.40913 hôpital néonatal de monaco 34 • 2025 • developmental observer dans la continuité du projet d’implantation du nidcap dans le service, un poste de référent est créé en 2011. le nombre d’observations augmente considérablement. deux années plus tard, l’équipe s’engage dans la démarche de certification nidcap. un seul service est alors certifié en france, le service de néonatologie du chu de brest. la certification est finalement obtenue par le service en 2016, récompensant alors le dynamisme et le travail de toute l’équipe. le travail sur l’allaitement maternel porte ses fruits et le service de maternité et de néonatalogie obtient la labellisation ihab en 2011 et est depuis régulièrement recertifié en 2015, 2019 et 2024. le service dispose de 2 postes de consultantes en lactation en journée en semaine (1 en maternité, 1 en néonatalogie), d’un poste de « référente nidcap » en journée en semaine en néonatalogie (avec renfort occasionnel d’autres ipde certifiées ou pédiatres certifiées) et d’un poste de « référente de soins » en journée en semaine. peu de temps après la certification nidcap, une antenne locale de l’association nationale « sos préma » est créée dans le service. mme wallet, maman bénévole de l’association, intervient régulièrement dans le service et organise des animations pour les familles. durant toutes ces années, l’aménagement du service est toujours repensé. l’espace cuisine des parents est entièrement rénové, des lits doubles pour les parents sont installés dans trois chambres parentales dans l’unité de néonatologie. la cuisine du personnel et l’accueil du service sont également redécorés grâce à la participation de l’association des « bricos du cœur ». en 2020, sous l’impulsion du projet national des « 1000 premiers jours », un projet est élaboré par le réseau régional de périnatalité orehane avec le soutien financier de l’agence régionale de santé des hauts de france. l’objectif était alors d’aider à l’implantation des soins de développement dans les unités néonatales en proposant des formations accessibles à tous. il s’agit alors d’une première expérimentation d’une telle ampleur en france. la formation de formateur nidcap de peggy laurant, infirmière puéricultrice de valenciennes débute, grâce sa mise à disposition par le centre hospitalier de valenciennes à hauteur de 50 % de son temps de travail. cette formation commence en 2021, assurée par la formatrice delphine druart du chu saint pierre de bruxelles sous la guidance de agneta kleberg et de déborah buehler pour l’apib. un long et ambitieux processus de formation débute alors et se déploie dans la région avec de nombreuses sessions d’initiation aux soins de développement menées par peggy laurant permettant la formation de 568 personnes de juin 2021 à octobre 2024 (sessions également animées par stéphanie giers professionnelle certifiée nidcap du centre hospitalier de roubaix en 2024). dans le cadre de sa formation de formatrice nidcap, deux infirmières de néonatologie de valenciennes sont certifiées par peggy. dans un second temps, les formations fine 2 débutent en immersion à valenciennes en 2023, avant de s’étendre à toute la région avec un total 8 professionnels formés en 2024 et 12 en cours de formation. (cf carte régionale). début 2024, la formation de formatrice nidcap de peggy laurant et la formation apib sont validées, le centre de formation nidcap de valenciennes est alors créé, dirigé par le docteur réthoré sabine (pédiatre certifiée nidcap) et co-dirigé par le docteur guilliot juliette (pédiatre cheffe de service certifiée nidcap) et peggy laurant comme formatrice nidcap. l’ouverture du centre de formation est le résultat d’un long processus, d’une longue relation de confiance entre les directions et les chefs de pôle… mais aussi le début d’une nouvelle histoire pour le service de néonatologie de valenciennes. a suivre… une salle commune à la maternité l'équipe nidcap de valenciennes 2025 • developmental observer • 35 n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa director: bonni moyer, mspt contact: annette villaverde email: annette.villaverde@ commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc and jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: nidcapchicago@gmail.com national nidcap training center boston children’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard. edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: nadine griffiths, mn and hannah dalrymple, mbbs contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@ health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattingerjürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierrebru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@ uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: tenna gladbo salmonsen, rn, mscn contact: eva jørgensen, rn email: nidcaptrainer@gmail.com danish nidcap training and development center, copenhagen copenhagen university hospital, rigshospitalet copenhagen, denmark director: jannie haaber, rn co-director: porntiva poorisrisak, md, phd contact: jannie haaber, rn, nidcap trainer email: nidcap.rigshospitalet@ regionh.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr saint-brieuc nidcap training center saint-brieuc – paimpol – tréguier hospital center saint-brieuc, france director: marie-cécile androgarcon, md contact: aurélie guillou, rn email: aurelie.guillou@armorsante. bzh nidcap training centre hospitalier de valenciennes valenciennes, france director: sabine rethore, md co-director: juliette barois, md contact: peggy laurant, rn email: p.laurant@orehane.fr 36 • 2025 • developmental observer n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med. uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: alberto berardi, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail. com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@ gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid. org sant joan de déu barcelona nidcap training center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: agnes linnér, md, phd co-director: siri lilliesköld, rn, ms contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: beverley hicks, ot email: beverleyann.hicks@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: daliasil1960@gmail.com asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com 2025 • developmental observer • 37 www.nidcap.org 20 • 2022 • developmental observer introduction trauma informed developmentally supportive care creates a culture of care that focuses on the human experience. the concept of trauma informed care was co-opted from the field of behavioral and mental health in 2013 for application in the newborn intensive care unit (nicu). in essence, the concept realizes the pervasiveness of trauma in everyday life, recognizes signs and symptoms of trauma, responds to trauma through the adoption of evidence-informed best practices, and resists re-traumatization. research across a wide range of scientific fields as diverse as neuroscience, molecular biology, epigenetics, developmental psychology, and psychoneuroimmunology verify intensive care hospitalization as a traumatic life event for babies, families, and clinicians.1, 2 this experience is associated with significant morbidity and mortality across physiological, psychological, socioemotional, and spiritual domains.1-6 most recently, the american academy of pediatrics (aap) has issued a policy statement summarizing the urgency and requisite steps necessary to facilitate the integration of trauma informed principles into all pediatric points of care.3 “trauma-informed care (tic) in child health care operationalizes the biological evidence of toxic stress with the insights of attachment and resilience to enhance healthcare delivery to mitigate the effects of trauma”.3 what is trauma? according to the substance abuse and mental health services administration, trauma results from an event, a series of events, or a set of circumstances that is experienced by an individual as physically and/or emotionally harmful or life-threatening and has lasting adverse effects on the individual’s functioning as well as their mental, physical, social, emotional, and/or spiritual well-being.7 within the context of the nicu, infants experience trauma in big and small ways; from life-threatening illness to the day-to-day experiences of parental separation, fragmented sleep, a disruptive environment, painful experiences, stressful eating encounters, limited mobility, prolonged time in bed, and so much more. maternal separation is the most significant trauma experienced by all newborn mammals and preterm and/or critically ill newborns are no exception to this reality. morgan et al. discovered that separation of mother and baby at two days of age for one hour results in a 176% increase in autonomic activity and an 86% reduction in quiet sleep with sleep cycling almost abolished during the separation period.8 in the nicu, the experience of maternal separation becomes the foundation for cumulative toxic stress exposures that include unmanaged or undermanaged stress and pain, sleep fragmentation, susceptibility to inappropriate sensory stimuli from the physical and social environments, postural malalignment, and hazardous rituals and routines that do not honor the personhood of the baby.9 the trauma experienced in this setting, however, is not limited to the baby but encompasses the family’s experience as well as the experience of the clinician who bears witness to the lived trauma of both baby and family. why is trauma informed developmental care important? adversity during childhood impacts the developmental trajectory of health and wellness across the lifespan.2 individuals who survive childhood adversity are at greater risk for cardiovascular disease, metabolic syndromes, generalized anxiety disorders, depression, and other forms of psychopathology as well as central sensitizing syndromes that encompass fibromyalgia, migraines, and irritable bowel syndrome to name a few.10 in a cohort study of more than six million individuals with a birth history of varying degrees of prematurity there is a clear association of increased risk for premature adult death associated with non-communicable diseases; however, the most common cause of premature death in individuals born premature is accidents and suicide.11 in addition to the trauma endured by the hospitalized baby, the family experience of nicu hospitalization has been described as a traumatic event that shatters hopes, dreams, and expectations for parenthood. roque et al. report the significant impact the nicu experience has on the emotional and mental health of parents.12 outcomes include an increased risk of depression, anxiety, and post-traumatic stress disorder for both mothers and fathers because of their baby’s nicu hospitalization.12 finally, research highlights the effect of bearing witness to tragedy and trauma on clinicians’ physical, emotional, and spiritual health. bearing witness is a “human-to-human way of being-relating” to the truth of another’s experience.13 however, when clinicians are not aware of the dynamic nature of trauma and trauma exposure it may limit their ability to interact in meaningful and safe ways with patients and families while also disrupting their personal wholeness.14 why a trauma informed approach to care? trauma informed developmental care invites individuals to move past procedure-driven routines, rituals, and practices; to shift from a dualistic perspective on healthcare to a wholistic perspective. a trauma informed approach enables clinicians to not only understand the biological implications of trauma, trauma informed developmentally supportive care kristy fuller, otr/l, cnt, clc; tara dewolfe, dpt, cnt, clc; mary coughlin bsn, rn, ms, nnp, rnc-e caring essentials collaborative, llc boston ma, usa doi: 10.14434/do.v15i1.33788 2022 • developmental observer • 21 but to then take the necessary actions to buffer the trauma experience. policies, protocols, and practices don’t transform an experience, people do. exploring trauma informed care begins with getting in touch with one’s own story. it is through personal self-discovery that one can connect authentically with others and begin the paradigm shift. “in the process of creating transformation we ourselves are transformed” mary coughlin how to create transformation? personal transformation is the key to cultural transformation. in the words of carl jung, “your vision will become clear only when you can look into your own heart. who looks outside, dreams, who looks inside, awakens”. (carl jung, letters vol 1 – 1906-1950, p33, princeton university press, 1973). becoming a trauma informed professional (tip) is a journey of self-discovery and personal growth that awakens the individual to their potentiality as a leader for change and a healer of hurts that too often go unnoticed in the highly technological world of newborn intensive care. eight attributes of the trauma informed professional have been established by an international, interdisciplinary faculty board of neonatal experts. these attributes are: • knowledgeable: understanding core knowledge regarding the science underpinning early life adversity and the biologic sequelae. • healing intention: fostering intention and presence, a cornerstone of trauma informed care, and based upon unitary caring science theory. • personal wholeness: developing habits to support physical, psychological, social, spiritual, and existential well-being. • courage: taking courageous action to effect change, increase self-actualization, and reduce moral distress by respectfully challenging the status quo. • advocacy: showing up for self and others by demonstrating respectful influence and inspiring excellence. • role model and mentor: integrating the qualities of humility and empathy as a role model and mentor to inspire others to greater success. • scholarly: pursuing scholarship to consider all ways of sharing information. • leader for change: cultivating a respectful approach to leadership as a trauma informed professional is transformational. endorsed by the nidcap federation international, the national association of neonatal nurses, the council of international neonatal nurses and the national association of perinatal social workers, the program combines online and virtual/live education to support clinicians in developing competence across the eight attributes of the trauma informed professional. (learn more: https://www. caringessentials.net/). 22 • 2022 • developmental observer collaborative caring the aligned missions of caring essentials collaborative and the nidcap federation international have led to collaborative teamwork aimed at transforming the experience of care for babies, families, and clinicians in the nicu and beyond. the complementary nature of nidcap certification and the trauma informed professional certificate program serves to advance the competencies of the bedside clinician empowering these individuals to become confident leaders for change. nidcap observers bear witness to the tiniest expressions of suffering, beyond what others can see. this depth of awareness takes a toll on the observer. becoming a trauma informed nidcap professional mitigates this impact on self and others. integrating trauma informed developmentally supportive care in the nicu and beyond changes not only individual lives but society at large. together, we can design the future of truly compassionate healthcare. references 1. coughlin m. transformative nursing in the nicu: trauma-informed age-appropriate care. 2nd ed. new york: springer publishing company; 2021 2. shonkoff jp, garner as, committee on psychosocial aspects of child and family health, committee on early childhood, adoption, and dependent care, section on developmental and behavioral pediatrics. the lifelong effects of early childhood adversity and toxic stress. pediatrics. 2012 jan; 129(1): e232-e246. doi:10.1542/peds.2011-2663. 3. duffee j, szilagyi m, forkey h, kelly et, council on community pediatrics, council on foster care, adoption, and kinship care, council on child abuse and neglect, committee on psychosocial aspects of child and family health. trauma-informed care in child health systems. pediatrics. 2021 aug;148(2):e2021052579. doi: https://doi. org/10.1542/peds.2021-052579. 4. forkey h, szilagyi m., kelly et, duffee j, council on foster care, adoption, and kinship care, council on community pediatrics, council on child abuse and neglect, committee on psychosocial aspects of child and family health. trauma-informed care. pediatrics. 2021 aug;148(2):e2021052580; doi: https://doi.org/10.1542/peds.2021052580. 5. montirosso r, tronick e, borgatti r. promoting neuroprotective care in neonatal intensive care units and preterm infant development: insights from the neonatal adequate care for quality-of-life study. child development perspectives. 2017 nov;11(1):9–15. https:// doi.org/10.1111/cdep.12208. 6. sanders mr, hall sl. trauma-informed care in the newborn intensive care unit: promoting safety, security, and connectedness. journal of perinatology. 2018 jan;38(1):3-10. doi: 10.1038/jp.2017.124. 7. substance abuse and mental health services administration. samhsa’s concept of trauma and guidance for a trauma-informed approach. hhs publication no. (sma) 14-4884. rockville, md: substance abuse and mental health services administration, 2014. 8. morgan b e, horn ar, bergman n j. should neonates sleep alone? biol psychiatry. 2011 nov 1;70(9):817–825. https://doi.org/10.1016/j. biopsych.2011.06.018. 9. weber a, harrison tm. reducing toxic stress in the nicu to improve infant outcomes. nurs outlook. 2019 mar-apr;67(2):169–189. https://doi.org/10.1016/j.outlook.2018.11.002 10. crump c. an overview of adult health outcomes after preterm birth. early hum dev. 2020 nov;150:105187. doi: 10.1016/j.earlhumdev.2020.105187. 11. risnes k, bilsteen jf, brown p, pulakka a, anderson a-mn, opdahl, s., et al. mortality among young adults born preterm and early term in 4 nordic nations. jama netw open 2021 jan 4;4(1):e2032779. doi: 10.1001/jamanetworkopen.2020.32779. 12. roque atf, lasiuk gc, radunz v, hegadoren, k. scoping review of the mental health of parents of infants in the nicu. j obstet gynecol neonatal nurs. 2017 julaug;46(4):576-587. doi: 10.1016/j.jogn.2017.02.005.  13. naef r. bearing witness: a moral way of engaging in the nurse-person relationship. nurs philos. 2006 jul;7(3):146-156. doi: 10.1111/j.1466769x.2006.00271.x 14. missouridou e. secondary posttraumatic stress and nurses’ emotional responses to patient’s trauma. j trauma nurs. 2017 mar/apr;24(2):110-115. doi: 10.1097/ jtn.0000000000000274. co-regulation during care giving tasks nidcap care in the moment 12 • 2022 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 tybekhan jm 1,2,3, van der leek c 4, gustin b 4, salamon k4, von hauff p5 1 stollery children’s hospital 2 dept of pediatrics, university of alberta 3 edmonton nidcap training centre canada (entcc) 4 dept of industrial design, university of alberta 5 academic technology, faculty of medicine and dentistry, university of alberta. (all located in edmonton, canada) background the nfi’s strategic plan (2017) includes “strengthening nidcap training processes” and “expanding nidcap education and training resources”.1 nfi members discussed ‘training materials and pathways’ at the nidcap trainers meeting 2019.2 however, constraints of time, people-power and resources mean that a logical starting point for the development of enhanced training materials has not yet been defined. coincidentally, the edmonton nicu has been exploring the creation of an online educational platform with the departments of academic technology (at) and industrial design (id) at the university of alberta (u of a). this platform could host specialized training programs offered in edmonton – one of these being nidcap.3 at and id at u of a have previously developed educational material for use in clinical settings, e.g. neonatal resuscitation,4 electronic portfolios.5 some of this work is distinctly family-focused, e.g. 3-d models of the heart to help families and learners understand the anatomy of congenital cardiac anomalies.6 learning about this work led to the first meeting of our study team. at faculty and id students quickly grasped the essence of nidcap and three students devoted their final practicum to this project. aims/purpose id brings an interdisciplinary approach to improve the quality of experience and to overcome challenges, using profession-specific analytical methods. the aim was to use the id perspective to create a model to serve nidcap in a contemporary, globalised context. for this first phase of our collaborative project, id students focused on the educational pathway of nidcap training, i.e. preliminary readings, didactic lecture, individual training, advanced practicum of nidcap training, and certification. relevance to nidcap nidcap is a training program. augmenting the success of this training will directly impact clinical care and improve the outcomes of hospitalised newborn infants. this project directly addresses some of the nfi’s strategic goals.1 methods primary research methods included interviews, and the use of convergent and divergent design thinking, using a ‘double diamond’ diagram (figure 1). the double diamond is a common design model used to showcase different thinking skills throughout a design process. id students visited the edmonton nidcap training centre canada (entcc) to gain an understanding of the nidcap training framework, and the intricate relationship of trainer and trainee. they toured the nicu to see ‘nidcap in action’. further insights were obtained through interviews with members of entcc and the edmonton nicu program. the id approach of interviews and design-based methodology enabled critical analysis and distillation of the multilayered steps of nidcap training. creating a series of spider diagrams enabled the delineation of areas of intervention and existing relationships within the nidcap training pathway, (figure 2). this led to a practical, defined starting point for a small change that could have great impact. results/findings the study team agreed early in the process that a functional, on-line learning platform could not be created without this preliminary work. id methodology led to a practical first step towards enhanced nidcap training: “how can the nidcap observation sheet be made easier to learn?” the sequential stages that led to this result will be explained during the presentation. the goal was not to change the existing observation sheet; making this easier for trainees would be similar to practice exercises for learning the use of a computer keyboard. conclusions id methodology applied to the nidcap training pathway found that the nidcap observation sheet is a logical first nidcap partners with industrial design: training for success figure 1 a design process: convergent and divergent thinking diamond doi: 10.14434/do.v15i1.33779 2022 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 point for adaptation. this conclusion could provide focus for the nfi’s next steps related to training materials and pathways. further work should explore such adaptation(s), with respect to the educational experience and success of training. collaboration with at, id and other professions could help accomplish nfi strategic goals. references: 1. nidcap federation international (nfi) strategic plan (2017). available at <nidcap. org/wpcontent/uploads/2017/12/2017-strategic-plan-adopted-oct2017-minor-edits-nov-2017.pdf> 2. silberstein d and tyebkhan jm. summary document ‘topic 3 training materials and methodologies; summary and action items from nidcap trainers meeting 2019’. available on request from j tyebkhan 3. specialty neonatal training offered in edmonton includes mindfulness in the nicu and targeted neonatal echocardiography 4. ghoman sk, cutumisu m, schmölzer gm. simulation-based summative assessment of neonatal resuscitation providers using the retain serious board game-a pilot study. front pediatr 2020 jan 31;8:14. doi: 10.3389/fped.2020.00014. ecollection 2020 5. sonnenberg l, von hauff p, lemieux l. electronic portfolios for assessment in postgraduate medical education. med ed publish, 2017. available at https://doi.org/10.15694/ mep.2017.000066 6. larson c et al. see https://edmontonjournal.com/news/local-news/heart-transplantmodel-takes-starwars-shape figure 2 preliminary prototype a spider diagram used to illustrate multiple relationships within a design problem. this diagram illustrates a step along the process of arriving at our proposed design solution. the nidcap federation international has reached 20 years and we all look forward to the celebrations at this year's nidcap trainers meeting. in this issue we highlight the work of the various committees within the nfi. i encourage you, the members to get involved as your organization is only as strong as the membership’s contributions. in this issue eleni gerassis shows us how the impact of having a sick baby proved to be a catalyst for her amazing ongoing support for the current families as she celebrates her daughter’s 13 years. we can learn so much from the families and how they cope with the trauma of an early birth. we are challenged to improve our practice. inge van herreweghe and delphine druart in belgium share their efforts to improve feeding practices for small babies. from her science desk, ita litmanovitz challenges us about technology and its impact on the babies and families. the profile of the children’s hospital university of illinois (chui) training center takes you through a nidcap report to give an update on their amazing work. we travel to south africa to hear about one woman’s extraordinary work to ensure developmental care has an impact – congratulations welma lubbe. the facebook pages of many of the training centers highlight nidcap. if your center has a facebook page please let me know so i can profile your work. the number of publications relevant to nidcap is increasing – a small sample is included in this issue. enjoy the issue and please let me know what you liked and what you would like to see more of in future issues. kaye spence am senior editor – developmental observer adjunct associate professor/ clinical nurse consultant, australasian nidcap training centre/ sydney children’s hospitals network / western sydney university/australia 2021 vol. 14 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “the best time to plant a tree was 20 years ago. the second-best time is now.” chinese proverb table of contents editorial ...................................................... 1 the nfi celebrates 20 years ..................... 2 evolution of national guidelines ............ 4 family voices ............................................ 8 global perspectives ............................... 10 nidcap training centers around the world ........................................................ 14 the science desk .................................. 18 publications ............................................ 21 nidcap on the web ................................ 27 issn: 2689-2650 (online) do 14:2 full issue doi: 110.14434/do.v14i2.32997 nidcap care in the moment used with permission calming supportive hands greetings from the editor nfi celebrating 20years! read about our history and becoming a member on p.2. 14 • 2022 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 chabba r, tyebkhan j edmonton nidcap training centre canada (entcc) citation: eckleberry-hunt j, lick d, hunt r. is medical education ready for generation z. j grad med educ. 2018;10(4):378-381 the article begins by pointing out how medical education should plan to make adaptations based on how different generation z is from other generations. generation z are those born between 1995 and 2012. they are the only generation that has always had access to the internet and social networking, and hence have a hard time disengaging from technology. they are hardworking and independent in their learning but also prefer close mentoring relationships. having always had access to technology and the internet, they want to know what they need to know in the moment and prefer not to spend long hours listening to lectures. rather than the traditional approach to medical education, these students will both need and expect a customized experience. generation z is known to have a shorter attention span compared to other generations, and expect material presented to them to be engaging. since retrieving information has always been so easy for this generation, they lack the skills to be able to evaluate information and will need help to do so. the authors suggest education of generation z should include modern technology, and creative modalities such as podcasts and simulations. this generation also expects quick and personal feedback. active learning methods including reflection and discussion will be more useful with this generation versus traditional lectures. the authors conclude by reminding us that the goal should always be to ensure quality patient care as we consider making these changes, although historically, medical education has been hesitant to make reforms. relevance for nidcap • the youngest parents and new staff coming into the nicu are generation z and will want to receive information as described by this article. • the nidcap model involves observation and sharing that observation in a detailed narrative report to both staff and patients. based on the findings of this article, both staff and patients may not engage with this material thus suggesting there is an immediate need for change. • the new generation of nidcap trainees are likely to prefer more creative ways of sharing their observations. we suggest that these creative ways are embraced by the nfi. thergaonkar n. aaroha centre for psychological services, mumbai, india citation: montirosso r, rosa e, giorda r early intervention study group, et al early parenting intervention – biobehavioral outcomes in infants with neurodevelopmental disabilities (epi-bond): study protocol for an italian multicentre randomised controlled trial bmj open 2020;10:e035249. doi: 10.1136/bmjopen-2019-035249 overview infants with neurodevelopmental disability are at risk for altered behavioral and socioemotional patterns. the present longitudinal, multi-center interventional clinical trial aims at assessing the effectiveness of an early parenting intervention based on video-feedback technique (vfi) to support maternal responsiveness (parental sensitivity) and the socio-emotional development of infants with developmental disabilities using a multi-layer approach to outcomes assessment (behavioral, neuroendocrine and epigenetic outcomes). the study plans an estimated enrollment of 180 participants, randomized into parallel assignment intervention model with double masking participant, outcome assessors. the study start date was september 2019 and estimated completion date was december 2021. study design inclusion criteria • infants: age range 3-18 months with mildmoderate psychomotor delay journal club presentation: early parenting intervention – biobehavioral outcomes in infants with neurodevelopmental disabilities (epi-bond): study protocol for an italian multicenter randomized controlled trial journal club presentation: is medical education ready for generation z? doi: 10.14434/do.v15i1.33782 doi: 10.14434/do.v15i1.33783 14 • 2021 • developmental observer column editor – debra paul, otr/l fa m i ly v o i c e s heartbreak and hope during the pandemic lindsay gilmore our pregnancy story begins as most do. kyle and i became pregnant just a few months after officially deciding that we were ready for the new adventure of a child. we felt overly excited despite the typical dose of apprehension. my pregnancy consisted of the average morning sickness, body aches, and back pain; without fail all my symptoms were affirmed by the pregnancy apps that i would reference religiously. what was not average was the rise of a pandemic in my third trimester, one we have now all been impacted by in countless ways. at first, for us, this simply meant that we could hunker down together at home. i could do my best to teach middle schoolers online and my husband was being paid to stay home for a short time from his government job. this allowed us to do slow jogs together, cook yummy food, and prepare the nursery for the arrival of our sweet baby. we both felt quite happy in our new quarantine and i felt lucky for the chance to succumb to my aching and tired limbs. on april 1st, 2020, week 31 of pregnancy, we had a perfectly routine ultrasound, except for the new personal protective equipment (ppe) that our doctors and nurses were brandishing, of course. it was just two days later that the pregnancy took a startling turn. the baby inside of me, which we had yet to know was a boy or a girl, was quite the acrobat. our baby moved predictably, and i could trust that around 7:30 each evening i would feel a fury of movement. i will always be so grateful for this predictability, as it is one of many things that would come to save the life of our sweet baby girl. come thursday evening, i didn’t feel the baby move as i typically would, but i did feel a series of irregular braxton hicks contractions. i assumed that the lack of fetal movement was simply replaced by another typical sensation. the next day, while remote teaching on zoom (video conferencing), i recall pausing to notice and wonder what was keeping my baby so quiet, as i had yet to feel any noticeable movement that day. while i knew that fetal movement often decreased later in term, i nevertheless felt unsettled about the lack of motion. something didn’t feel right. the day went on as i played mental ping pong, alternating between feeling as if i was being overly dramatic, and then feeling genuinely concerned. come nine pm that night, after trying everything google told me to-jumping jacks, chocolate milk, a bright light, talking loudly, glass after glass of juice, i still felt nothing and finally decided to call my provider. thankfully, the on-call obstetrician (ob) that night listened intently and wasted no time validating my concern. her responsiveness was yet another life saving measure. she later told me that knowing what she knows now, she guesses that our baby girl had only about two more hours of life left in utero, had we not quickly found her a way out. the next few hours were spent getting checked in to the local hospital and assessing the situation. what kyle and i deemed routine protocol, ultimately led to the appearance of my ob and a team of nurses, dressed for surgery. typically, medical emergencies would be flown down to denver, as we were in a small mountain community without the same level of care, nearing the end of our nicu journey at 40 weeks. doi: 10.14434/do.v14i1.31814 the journey of having an infant in the intensive care setting is a life altering event; one that many parents are not anticipating and will not soon forget. covid-19 and the challenges associated with it have had a profound impact on infants and families whose life starts in the nicu. we have heard from our nicu colleagues across the world regarding policy changes in the face of the pandemic including restrictions in parents being with their infant which of course, has compounded the overwhelming stress and sadness parents experience. in this article, lindsay gilmore shares the story of her family’s experience in the nicu at the onset of the pandemic and how they navigated it with courage and hope. developmental observer • 2021 • 15 but it was decided that our baby was in immediate danger and we didn’t have the necessary time for travel. instead, kyle and i were informed that a children’s hospital colorado nicu flight team would arrive to meet our baby upon birth. at 1:51 am on april 3rd, luka lorene, was born extremely ill at 3 pounds, 5 ounces (1587 gram). with a low hematocrit of 6 (g/dl) and a low hemoglobin of 2, (g/dl) she had an acute loss of blood and oxygen. as it turns out, the nicu flight team was significantly delayed due to weather, and so the team at our local hospital stepped up and helped to maintain our daughter’s life. after an incredibly traumatic few hours, the nicu team arrived and luka was finally transported down to the children’s hospital in aurora, colorado. kyle left to meet luka as she arrived at the hospital, and our nicu journey began. the next 24 hours were the most difficult of our lives as we fielded conversations about how sick our daughter was and heard expectations of her outcomes-these were face to face conversations for kyle, and communicated over the phone to me, as i remained in a different county. there was immediate confusion about why luka was so sick and what went so wrong in utero. as there was no obvious explanation, doctors wondered if perhaps covid-19 was to blame. she and i were tested but had to wait some time for results. when we received word that luka wasn’t expected to make it through the night, there was back and forth discussions about whether or not it would be safe for me to be reunited with her. a plan was made to discharge me under the premise that i was infected with covid-19, and so i left in the hands of my parents to be driven to denver 15 hours after my emergency c-section. i arrived at the “dirty hall”-the space that was reserved for those suspected of covid-19 and took in the harsh sights and sounds of the nicu. the following hours continued to be a blur, but it was a comfort to touch the arms and legs of my sweet girl through the plastic walls of her isolette. the myriad of bells and alarms continued to ring in our ears as we watched many people come in and out of the room, managing the countless wires and tubes coming from her body and at times, attending to us. at the time, i didn’t know who these people were, but i now know it was her exceptional team of doctors, nurses, respiratory therapists, ultrasound techs, nurse practitioners, social workers, specialists, and the like. it looked as if we were in outer space, as they had ppe from head to toe and this being early april, not even masks felt commonplace. it was all so out of body, and beyond terrifying. being the fighter she is, luka made it through the night. while her organs began to rebound, there continued to be trepidation about her outcomes. given that she was without oxygen for seven and a half minutes at birth, we were prepared for significant impact and insult to her brain. we were warned that she may not walk, talk, or play. miraculously, her brain magnetic resonance imaging (mri) scan a week later showed only mild brain trauma and she had no signs of seizures-we rejoiced! within one week, she had weaned off her ventilator, was opening her eyes, and her organs all seemed to be improving their function with every day. while we felt so encouraged by luka’s progress, the growing impact of covid-19 was creeping into the hospital and complicating an already difficult time. six days after we arrived at the nicu, the hospital enacted a one visitor per room policy. this was hard to swallow, as neither kyle nor i could imagine losing time near luka or each other. we had incredible support and advocacy from our nicu care team, and they advocated for us to receive an exception for the first eight days while i continued to heal from my caesarean section. this was granted. because we lived at a distance from the hospital, we had been spending each night either in a hospital sleeper room or the hospital room itself, and so moving forward we were allowed to both be present in the hospital at the same time, just not together in luka’s hospital room. while this arrangement still created significant logistical issues and felt lonely and isolating, we felt so lucky for the exceptions. thankfully, this policy ended about a month later, and its end was met with great relief. the days transitioned to weeks, and eventually the weeks transitioned to months. we found our routines in the nicu. i became consumed with pumping and increasing my milk supply, asking for lactation support as often as i could. kyle became a master at coordinating our daily meals, keeping my water bottle full, and doing his part in skin to skin. we were solely focused on doing everything we could for luka and relished the opportunity to hold her for hours at a time, once we were finally able to do so. there were many lows-mastitis, a mysterious infection luka at one week of age luka at 5 months, celebrating being oxygen free by going on her first camping trip! 16 • 2021 • developmental observer in luka’s gland, disagreeing specialists, new iv’s (intravenous therapy), bradycardia events, and transfusions, but the highs overwhelmed them all. we delighted in her growth and the continued good news about her development. her occupational and physical therapy visits left us most encouraged; we appreciated the tangible advice and skills that we received from her ot and pt specialists, as we always felt more empowered to support luka. as luka’s rounds began to occur later in the day and at a much more rapid pace, we knew that we were nearing the end of our nicu stay. after 59 nights of sleeping at children’s hospital, it was finally time to leave. we were overwhelmed with joy that luka was healthy and ready to come home, but there was a deep sadness over saying goodbye to the people that had seen us through the most difficult experience of our lives. our gratitude for this team is without measure. their listening and encouragement, their secret hugs (in the time of covid-19), and their expertise left us in awe on a daily basis. we only just wish we were more acquainted with their beautiful faces; after so much time spent together, it was always a fun surprise if we caught a glimpse of anything more than their eyes below their masks. another pandemic reality. we still do not have answers about what went wrong in utero. there are theories-luka has a blood disorder, we experienced a fetomaternal hemorrhage, or she was on her way to a still-birth. the doctors still maintain that it’s a relative mystery. the best explanation came from one of our favorite neonatal nurse practitioners when she said, “consider yourself hit by lightning.” in the same way, we understand that it was only with answered prayers and pure luck that today, luka is thriving. we know full well that many nicu stories are without a happy ending and so we are beyond thankful that our prayers were answered in this way. for now, we treasure luka’s pure existence and feel blessed to be her parents. luka is now a happy 9 months and the gilmores are living their best life in the mountains of breckenridge, colorado. how you can celebrate » promote nidcap and the world day in your nursery and hospital » wear teal » have an afternoon or morning tea for your staff and families » celebrate and promote what your team has achieved in the past 12 months » share photos and posts on social media using #nidcap, #nidcappartneringwithfamilies and  #worldnidcapday » approach local news agencies for a story about nidcap in your unit/hospital » illuminate landmarks in your area in the nfi color teal » download promotional fact sheets, poster templates, the wnd logo world nidcap day march 20th 2021 developmental observer • 2019 • 3 aims/purpose the belgian government has always been very supportive concerning the implementation of individualized family-centered developmental care in newborn units. since 2012 the implementation of nidcap has been subsidized by the government. this project evolution demonstrated the benefit of nidcap on care practices1 and revealed the need for intermediate nidcap-based programs.2,3 this requires facilitation of nidcap implementation in newborn intensive care units (nicus) on the one hand, and development of programs adapted to the reality of intermediate newborn care units on the other hand. these findings matched the observations of the brussels nidcap training center. for a couple of years, a group of belgian nidcap professionals worked on an intermediate developmental care program. this program, called cle (compréhension du langage de l’enfant), was finalized three years ago after consulting other nidcap trainers. it is similar to the family and infant neurodevelopmental education (fine) program. the belgian federal government funds nidcap, fine and cle training in belgium. methods two questionnaires were conceived: • the first was designed for cle trainees and evaluates training, impact on caregiving, collaboration with families, and the trainees’ feedback on implementation in the newborn unit. • the second questionnaire was designed for parents and evaluates parent satisfaction with the guidance received, and the impact on parent involvement in decision-making and their ability to understand their baby. results in belgium, 11 hospitals received financial support for cle training. between october 2017 and june 2018, 34 caregivers started the cle program and 32 trainees completed the training in six hospitals. • 97% indicated the cle training has induced a lot of changes in the way they take care of babies. • 97% indicated training led to changes in the way they work with families. • 100% said the training helped them to question their own practices. • 97% said the training helped them to reflect on unit care practices. • 97% are satisfied with the training quality. • 94% indicated the training met their expectations. 42 questionnaires were completed by parents. • 95% indicated the cle program helped them to better understand their baby. • 93% felt encouraged to take part in decision-making. • 95% thought the cle program is helpful to parents. conclusion the cle program promotes the practice of family-centered developmental care. it meets professionals’ and parents’ expectations. an ongoing assessment of the evolution of developmental care practices in belgian hospitals carried out by the authorities, should highlight the impact of this training on future results at the national level. the cle program does not replace formal nidcap training but can help prepare units for the training as well as reduce the gap between practices carried out by nidcap certified professionals and the rest of the team. it meets the needs and specificities of level 2 newborn units in belgium. references 1. van herreweghe i, druart d, janssens k, clercx a, claesen m, tackoen m. a healthcare policy aiming to optimize parent–baby bonding in hospitals: the belgian example. revue de médecine.périnatale. 2016; 8(3):133-40 (in french). 2. als h. program guide – nidcap: an educational training program for health care professionals. nidcap federation international. 2015. retrieved from http://nidcap.org. 3. als h. toward a synactive theory of development. promise for the assessment of infant individuality. infant mental health journal. 1982; 3:229-43. evaluation of “cle” an intermediate family centered developmental care program based on the theoretical concept of the newborn individualized developmental care and assessment program (nidcap) druart da, grevesse lb, janssens kc, tackoen ma, van herreweghe ia anicu st pierre university hospital, brussels nidcap® training center, brussels, belgium bservice public fédéral santé publique, sécurité de la chaîne alimentaire et environnement, brussels nidcap® training center, brussels, belgium cservice public fédéral santé publique, sécurité de la chaîne alimentaire et environnement, uz leuven, belgium training center 2019 vol. 12 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “we are all visitors to this time, this place. we are just passing through. our purpose here is to observe, to learn, to grow, to love… and then we return home.” australian aboriginal proverb in conversation with heidelise als kaye spence, am in may this year i had the opportunity to have a conversation with dr. heidelise als in auckland, new zealand as she was the invited keynote speaker at the council of international neonatal nurses (coinn) 10th international conference. it was such an honour to have her speak and network with over 400 neonatal nurses from 23 countries. in a quiet corner of the hotel café we had a most enjoyable conversation. as heidelise sipped on her cappuccino she shared many stories, reflections and insights into nidcap and the impact it has on newborn infants and their families. i learned so much about this remarkable woman and the passion that has shaped her life. i would like to share parts of this conversation as i asked about her experience at the conference to trigger some thoughts about nidcap. ks: after three intense days at the conference would you like to share your overall impressions? ha: when i was invited and saw the conference theme, enriched family – enhanced care, i knew i wanted to attend. it was so in tune with the philosophy of nidcap. i was greetings from the editor it is with pride that i present this issue of the developmental observer. it has been a fascinating few months for nidcap and in this issue we showcase the expansion of the global work of nidcap. earlier this year i had the pleasure of attending the coinn (council of international neonatal nurses) international conference that was held in auckland, new zealand. this time it was particularly memorable as dr heidelise als was one of the invited keynote speakers. i must say heidi was in her element as nurses from many of the 23 countries represented sought her out for photographs and short conversations. she was always surrounded by groups of enthusiastic nurses, many of whom had studied her work in their university courses and knew what an honour it was to meet her. i took the opportunity to have a conversation which is included in this issue. this was enlightening for me as i have known heidi for nearly 20 years and yet this conversation revealed a different side to her. this issue also features stories about nidcap training, from the point of view of a novice nidcap trainer and a nidcap trainee challenged by her advanced practicum. these stories from dalia silberstein and kristen james nunez challenge us to think about our own practice and training. hopefully these stories may encourage others to share theirs. we also feature a profile on dominque haumont who provides us with table of contents in conversation with heidelise als ........ 1 editorial ...................................................... 1 family voices ............................................. 4 a novice trainer's look: shining moments and early lessons learned ...... 6 advanced practicum experience .......... 8 nidcap profile ......................................... 11 global perspectives of developmental care belize .............................................. 14 nidcap training centers around the world ................................................... 16 the science desk .................................... 18 published resources ............................... 20 nidcap on the web ................................ 25 dr. als giving her keynote address at the council of international neonatal nurses (coinn) 10th international conference. continued on page 2 continued on page 3 nidcap® is a registered trademark of the nfi, inc. ©nidcap federation international, 2019. 2 • 2019 • developmental observer in conversation with heidelise als (continued from page 1) happy to see the concurrence of all strands of the presentations and the themes which were complimentary to nidcap. each presentation was well thought out; the presenters were articulate with a certain seriousness and sincerity. i found the science presenters were diligent in their longitudinal research, the follow-up years and the large numbers of infants was impressive. seeing the outcomes of our work causes us to pause and reflect. the nursery world is so different from the womb. it’s like witnessing the evolution of our own species and looking at it from the outside. it was wonderful to hear the parents present; they have so much to teach us. ks: many of the delegates were impressed that you were in attendance for each session and you were taking notes. ha: why wouldn’t i? i have so much to learn. ks: what did you think of some of the futuristic presentations, for example the one on the artificial womb? i noticed you were quite absorbed. ha: i found it a thoughtful and sensitive presentation and the intellectual drive of the neonatologists and physiologists is impressive; they haven’t given up for nearly 50 years. this gives babies a chance, the more we learn the better we can make the experience for the newborn. you know i was present at some of those early trials in philadelphia. it was early in my career, around 1968 and i had come to the usa and had just completed my master’s degree. for my doctoral work i was in the nursery watching babies and doing pre-publication brazelton observations. i remember one of the pediatricians asking me what i was doing and i explained i was observing the baby. she asked if i would like to see babies more fascinating than the fullterm infants i was observing; of course i was curious, so she took me into a room on the side of the nursery. the room was full of various equipment, oxygenators, monitors and, in the middle, a table for the immature baby, who was about 28 weeks previable in those days. i was given the job of bagging the baby, who was flat on the table with the limbs restrained. i asked if we could help the baby tuck and place the hands to face and arms midline. as she spoke heidi took on the flexed position demonstrating the ideal position for the baby’s limbs and hands. she was demonstrating what she wanted to happen. i was told this was not possible as it could interfere with the tubes and wires! ks: did this influence you in any way on your early concept of nidcap? ha: yes, this was my first encounter with preemies. it made me think about their experiences and how they are looking for support and nurturing when surrounded by all the technology. developmental care and nidcap started. there were many challenges to getting these concepts into practice at the bedside and if you want to overcome those barriers you have to have the right persons. the psychologists have the ideas, but the doctors and nurses actually do it in practice. early on there were some real nursing champions (pat linton and gretchen lawhon) who were given the opportunity when developmental specialist positions were created. these were the early adopters, who helped make it happen, who made nidcap happen. ks: what to do you see as the impact of nidcap? at this conference as well as globally. ha: the number of nurses who spoke of their knowledge and awareness of my work surprised me. people seem hungry for information and they appear dedicated in using this for their interactions. you know this is only the second nursing conference to which i have been invited. the amount of research that has been accomplished is fantastic and there is an appreciation of the impact on the brain and the changes that occur. however, there remains a lack of recognition in one’s own local environment. this a semi-annual publication of the nidcap federation international ©2019. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science column editor debra paul otl contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer heidelise als enjoying the gastby dinner at the conference developmental observer • 2019 • 3 manifests in lack of support for development or research. in order for early intervention work to succeed, there must be support and this includes financial support. ultimately there are costs to the community, supporting families with babies who, early on, experienced less than optimal care and now require life-long support. ks: as one of the neonatologists said on the opening day – the nurses at the conference have a once in a lifetime opportunity at the conference to hear you speak. you received a standing ovation following your last presentation at the conference. how did this make you feel? ha:: very humble. maria maestro’s beautiful video had a lot to do with it. ks: i think you gave many hundreds of nurses a glimpse of what nidcap is and the work and research that have gone into making it the model of choice. you also showed them that you are also prepared to have fun. did you enjoy the gatsby dinner? ha: yes, it was fun, but i can’t dance the way i used to. i enjoy watching the young people enjoy themselves. ks: what would you say is your ‘pearl’ of nidcap? ha: everything matters, for what we experience once we can’t do it over or change what has happened. we always make the best of what we experience, and nothing is without cost. we all make mistakes and if we reflect and think about it we will figure it out so it won’t happen again. i have learned a lot from being the mother to a child who was different from birth. there is a consciousness that makes life enjoyable, happy and good. a baby has no way to pretend, so you must consider how you touch a baby, work with a baby, and the voice you use, as these all have an effect on the baby and potentially cost the baby. you must be aware and keep your focus on the baby. ks: nidcap was born 40 years ago what do you see as the biggest change that has occurred for nidcap over the past 40 years? ha: awareness of nidcap varies greatly and depends on where you come from. there must be more articulation and communication about the detail required. for example, the reports cannot be condensed, as you want the detail that describes the core of the baby, the observations and the recommendations. the baby’s goals are essential for the report. there have been many changes and more are required. a psychologist developed nidcap and is free of the burden of keeping the baby alive. it is the doctors and nurses who implement nidcap in partnership with the parent. if nidcap is embraced by nurses the direction can quickly change, the nurses drive the change. we have the unifying umbrella of the nidcap nursery program (nnp) to help with the system change. this together with programs such as fine and nidcap will ultimately benefit the baby and the family. of course if we are going to have programs to support the baby and family we also must support the staff. they have to have time away from the bedside for time out, self-awareness and reflection; this is very important and has to be part of the implementation plan. globally, we are expanding and we must engage those drivers who are interested and prepared to embrace nidcap and respond to requests for training. i think we are still figuring it out. ks: thank you, heidi, this has been very enlightening for me. i must say the video you showed in your presentation really had an impact on the audience. to see all those interventions being done, eye exam, cardiac echo while the baby was skin-to-skin with little reaction was truly nidcap. ha: yes, maria maestro from spain allowed me to share this video. it shows how a neonatologist, who is a nidcap trainer together with a nidcap professional nurse, can provide these opportunities that embrace nidcap and ultimately benefit the baby and mother. ks: on that note, thank you for your generosity of time for this conversation. we said our farewells and i watched this diminutive and powerful woman walk towards the elevator. as she did so, a group of nurses walking by turned and chatted amongst themselves and i overheard ‘that was heidelise als, wasn’t she inspirational’. photo of h.als presenting courtesy of coinn. insight into the challenges of establishing nidcap and provides many ideas of negotiating health systems. we also have an enlightening story from amanda n'zi sharing her story of kayden's journey. we have introduced a new regular feature of global perspectives of developmental care. the aim is to explore different countries and health care systems and how developmental care and nidcap is being implemented. we start with belize and melissa johnson gives us her perspective of the work she and her team have been doing there. we look forward to moving around the globe in future issues. our regular feature from the science desk returns after great feedback from the last issue. jeff alberts shares a light on research on fathers. other regular features of profiling nidcap training centers continue and this issue we feature the australasian nidcap training centre. as editor, i welcome your feedback on the content and look forward to reading your letters. send to: developmentalobserver@nidcap.org i would also like to acknowledge the encouragement from the editorial team and their hard work in generating ideas and reviewing the content for each issue. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia greetings from the editor (continued from page 1) 4 • 2019 • developmental observer column editor – debra paul, otr/l #everyhourstronger having a baby in the neonatal intensive care unit (nicu) is a heart-wrenching, anxiety-inducing, and challenging experience. no family wants to have a less-than-perfect baby at birth, and yet every day, babies are born prematurely or with other health complications who need additional intensive care. when this happens, parents find themselves visiting their newborns in the nicu instead of taking them home to the nursery room that they so lovingly decorated and prepared for their baby. amanda shares her personal journey – from the moment she was rushed to the hospital, to the emptiness she felt when her baby was whisked away after being born, to the unpredictability of having a son with special healthcare needs. but through it all she has learned that she is stronger and more brave than she ever thought possible. and so is her son. “congratulations and i am so sorry.” these were the first words my friend and fellow mom of a micro preemie said to me after my son was born and they are so true. the journey into parenthood is challenging, and when the journey begins with the nicu, it is terrifying. at 3 a.m. on the first day of my 26th week of pregnancy, i woke up bleeding with what we later learned was a placental abruption. my husband and i rushed to the hospital where we were told i was in preterm labor. my only thought was, “i can’t be in labor. we don’t even have a car seat.” i was in disbelief, and it was surreal to see the doctors and nurses rushing around while i was still trying to figure out what was happening. ivs were placed, magnesium was started as a neuroprotectant, steroid shots were given to help with lung development, and the nicu team came to speak with us. they told us about the different organ systems that would be monitored after our son was born and what were possible complications. my only question was, “what is the chance he will live?” as a child psychologist working at the time in a rehabilitation department for children with various types of brain injury, i knew too many stories of children born prematurely and with medical complications. my mind flooded with worst case scenarios. fear swept over me. this could not be happening. once magnesium was started, my labor slowed and i spent four days in the hospital, always within “6 hours of delivery.” the nicu team visited several times to answer questions as my husband and i adjusted our expectations of birth. we were going to have a micro preemie. i kept reminding myself that every hour i stayed pregnant gave him just a bit more time to get stronger, and it kept me going. i did a few “bucket list” items like having my husband read a story to my belly. when my body and my son’s body could hold on no longer, i had an emergency c-section. my husband was with me at his birth; i heard my son cry and then he was whisked off to the nicu with my husband close behind, and i was alone. i went to the recovery room and then learned how to pump. four hours later, they wheeled my bed to the nicu where i saw my son for the first time. he was intubated, under blue lights, so tiny, and the most beautiful (slightly alien-looking) child i had ever seen. the first week of the nicu went well. preemies are born with a valve in the heart that hasn’t closed yet called a pda (patent ductus arteriosus) and my son’s closed after receiving medication. he was weaning down on breathing support at a steady pace and we felt hopeful we would have an uneventful nicu stay and were amazed at the strength in that 2lb 10 oz child fighting to live. we helped with diaper changes and our son’s first “bath.” we prioritized bonding and self-care. my husband made sure we amanda and kayden fa m i ly v o i c e s developmental observer • 2019 • 5 slept at home and left the hospital. all the monitor beeping in a nicu can become overwhelming at times. we learned about bradycardia episodes and how to help when they happened. we held our son for the first time three days after his birth. we wouldn’t hold him again for two more weeks because the rollercoaster was about to take a turn. our son seemed sick. he was more lethargic, he needed more breathing support, and his condition was less stable. this means more alarms going off and more intense looks from staff. my son had a blood infection that began a chain reaction of terrifying moments. the pda in his heart reopened, he was too sick for surgery to close, and too sick to be held. we comforted him through the holes in his incubator. he was reintubated and put on an oscillating ventilator. our son had a spontaneous intestinal perforation and had to be transported with the flight for life team to a higher level of care nicu where he could be monitored by a surgery team. the hospital he was transferred to was the hospital where i worked. we watched our son struggle for his life two floors under my office. we watched nurses “chase” his blood pressure all day. we watched him need resuscitation several times. we watched helplessly as he fought to hold onto life. i pleaded, “i just want him to live.” with medication and a skilled nicu staff, we saw our son recover from his blood infection, make it through heart surgery, heal from his intestinal perforation without surgery, and come off intubation. although the rollercoaster did not end there, the scariest turn was over. the late-night emergency calls from the hospital continued because of his underdeveloped lungs and the difficulties he had learning how to breathe with less support. as the days dragged on, we were surrounded by family, friends, texts, meals, and love. i returned to work at the hospital after my 8 weeks to heal from the c-section and visited my son every day. i was grateful to be near him and came down to visit during the day and to pump. my husband and i became experts at giving our son a bath and changing diapers while navigating cords and breathing tubes. we learned how to comfort him during diaper changes and medical procedures and flooded him with love during kangaroo time. our son had a hard time tolerating kangaroo time very long because of his breathing, so we found lots of way to let him know he was loved. we visited him every day and checked in every night until he was ready to come home, 105 days after his birth. as we prepared to go home, my husband and i encountered changed expectations for what home would look like. we learned that breastfeeding would not be his feeding plan because he needed supplemented nutrition and that we would be going home with oxygen and numerous medications. we learned infant cpr. we learned we could not put our son in daycare. we learned we would need to limit visitors and practice good hand hygiene, all the time. we learned our current lifestyle and the ideas we had about life with a baby were not a match for what our son needed. we began to make changes to support this new path. the journey that started our son’s life has continued to be a rollercoaster. he has needed multiple surgeries since his discharge and has had additional readmissions to the hospital, including one more icu stay. our son has broken a bone, sprained his ankle, needed glasses, and used supplemental oxygen for 18 months. i often say our son has had a lifetime in two years. he continues to need a daily inhaler to help him breath. he has attended and still attends physical therapy, occupational therapy, developmental services, numerous doctor’s appointments, and specialty visits. we have missed family outings and have stayed in our home during two respiratory seasons to keep him healthy. we have become experts in changing oxygen tanks, monitoring a pulse-ox, and checking for signs of respiratory distress. we have experienced first hand the impact of medical trauma on ourselves, our marriage, and our family. we have learned to look at the world differently. we have learned to be our son’s guide and support through the hard times. we have learned how little we can actually control. and, as the scary moments become less frequent and less intense, we have learned that nicu families are brave, that we are brave, and that we will always be #everyhourstronger. kayden is now two and a half years old. amanda n’zi, phd is a licensed child psychologist. she works in private practice in denver, co. #everyhourstronger kayden aged 4 days with parent’s enfolding him 6 • 2019 • developmental observer a novice trainer's look: shining moments and early lessons learned dalia silberstein, phd israel nidcap training center in this article i share my personal perspective on what nidcap training means to me. not any training, but specifically that in which i became a nidcap trainer; in which my trainees and i did that very special journey for the first time. the article does not bring an all-encompassing perspective of that experience, but rather a few salient revelations that became important lessons for me. it does not propose a generalizable view of what nidcap training is or should be, nor pretends to offer clear-cut guidelines to the new trainer. and yet, it might provide others the possibility to appraise and reflect on their own training experiences. the freedom to reflect "freedom is nothing else but a chance to be better". — albert camus nidcap practice is about observing, articulating what you observed, and reflecting on it. the nidcap observation writeup, and its depiction of infant behavior in terms of the infant's strengths and sensitivities, developmental goals and suggestions for care, is no doubt one of the main "outputs" of a nidcap observation. a good write-up allows us to actually depict in our mind the intricacies and complexities that took place between the infant and the caregiver, and to grasp the infant's behavioral flow in a smooth, natural and logical wayeven when we have not actually witnessed it. a nidcap write-up, thus provides a unique and quite structured window to infant behavior. however, it is the reflective process intrinsic to an observation whether it is written or spoken that affords us a window to the observer's (i.e., the trainee's) soul. i captured the wholeness and richness of the learning process involved in nidcap training, only when the trainees' reflections were articulated and shared with me. although i cherished reflection and have always felt affinity to the reflective processes involved in nidcap work, it was while guiding my trainees through the advanced practicum that i distinctly felt there is a hidden magic to it. even when the trainees made huge progress and excelled in their observations and write-ups, it was only when they reflected about them that i felt their more vivid and multifaceted "selves" emerged. it was indeed in the reflections they shared that i more readily perceived each trainee's freedom to relate to her own experiences, insights and feelings in regard to the observation performed. that hidden magic of the reflection component of training, lays in the fact that when articulating it, trainees do not follow a specific structure or script, nor are constrained to address a particular theme, or compelled to consider each and every aspect of the caregiving interaction. quite the opposite. i prefer to think of the reflection piece of training as the one in which i prompt my trainees to actually "go wild"; the part in which they decide what they are focusing on – whether on their own feelings, the infant's experience, the family constellation, the caregiver's input, the environment, the shining moments they will cherish forever, or perhaps the mismatches they would rather not have witnessed. every thought and perception stemming from an observation is certainly legitimate and beneficial for developing a trainee's reflective competences, and to deepen our understanding of each caregiving situation. the framework for reflection involved in the nidcap training process, and even more so, the formal requirement to write those reflections down, is a crucial component of training for a wide variety of reasons, one of them being the liberating experience it affords both to the trainee and the trainer. and yet, is a sense of liberation at all important for infant care in the nidcap approach? as we constantly evolve and improve our practice as healthcare professionals, we look for innovative techniques, refine our skills, and acquire new competence. nevertheless, for many of us the ability to reflect has not traditionally been an integral part of our training nor has been cultivated and respected as an important professional attribute. even today, and in spite of the continuous evolution of our professions and work places, reflective abilities are not necessarily a valued component in a health professional's identity. reflection on our own practice requires some dose of introspection, sensitivity, tolerance, open-mindedness, and readiness to slow down. it demands our readiness to abandon our zone of comfort and requires our willingness to look at a situation anew. it turns out that as nidcap professionals and trainers, we might often be invested in conveying a not so popular message in the intensive care scenario: that reflection is a fundamental tenet of good neonatal care. in this context, the reflective experience afforded by nidcap training might well be the trainee's first "exercise" of an open and genuine reflection. by genuine, i mean taking the liberty and affording the time to wonder and to question, to think out of the box, to be humble and honest enough to be able to see both the lights and the shadows in each caregiving interaction. from left to right: gretchen lawhon, master trainer, adi freund-azaria, mot, abigail marashli, rn, bn, liat michli, bpt, andy levy, rn, mn, ita litmanovitz, md and trainer, dalia silberstein, rn, phd and trainer. developmental observer • 2019 • 7 my first experiences as a nidcap trainer taught me that to foster and protect the trainee's liberty to think and reflect, is one of the trainer's more rewarding roles. "tribal" power "individually, we are one drop. together, we are an ocean". — ryunosuke satoro my initial perception was that nidcap training is a learning and personal growth process that takes place essentially between two people: the trainee and the trainer. however, in my first experience as a trainer, the power of group work became clearly apparent. it turned out to be a critical yet quite unexpected ingredient of the training process. our first group of trainees' ability to function as a consolidated group was one of the group's decisive strengths. regardless of each trainee's professional and individual characteristics, the group managed to make progress in a wellcoordinated fashion. much energy is invested by trainees who undertake nidcap training and integrate it in their already demanding personal and professional lives. i believe this essential energy was maintained by virtue of the trainees becoming a group moving forward together. there was a "tribal" atmosphere to this initial nidcap training experience which enabled mutual motivation, reinforcement and support. while each trainee managed to keep her individuality and to personally imprint the process, they spontaneously maintained an emphasis on the group's common goals. it seems to me that fostering the power of our trainees as a group is an important part of our role as trainers as well. after all, nidcap care is about strengthening individualities (the infant's, the family's, the trainee's) while reinforcing a sense of belonging and being held. a microcosm in each advanced practicum (ap) "if everyone would look for that uniqueness then we would have a very colorful world". —michael schenker i learned that a fraction of life's complexities is represented in each and every advanced practicum experience. when reading our trainees' aps, it was as if each of them provided me with a fine telescope to look into a delicate, detailed and ever changing microcosm that, otherwise, would remain distant and out of sight. it is in fact the emerging story of an infant within his or her family that is captured in that sequence of observations that conforms to the practicum. as such, the ap provides both the trainee and the trainer with the opportunity to look closer at that microcosm and, if fortunate enough, to be able to contribute to a better beginning for that family. at some point, i intently tried to capture that ultimate single essence i believed there was in each observation and each ap i read. at a first glance, that may seem like an inappropriate simplistic approach to a complex phenomenon. yet, this kind of "synthetic" thinking, in which i tried to identify the core, the very essence of each infant-caregiver interaction, was extremely helpful for me. i thought it could perhaps be so for my trainees also. i learnt that the mental exercise of giving an imaginary title to the observed interaction, contributes to the reflection process. for i realized that even long and complex essays have titles; deep and intricate poems have titles; refined and detailed research studies are given a title. in my view, giving that imaginary title to what is observed and experienced in nidcap observations does not necessarily reduce our understanding or lacks the possibility of a broader insight, but rather helps us to focus our reflection on the topics we would like to emphasize in the training process. thus, when observing an infant or while reflecting and giving feedback on a nidcap write-up, i often asked myself, and prompted my trainees to ask themselves: "what was the infant's main message"; " is there something the infant is saying sound and clear?"; "what would be the headline for the infant's story in this specific observation?". there was therefore an essence to capture by each trainee in each of their aps. for one trainee, it was about finding the strength to engage in a new and fresh relationship after experiencing the loss of the baby she originally attempted to follow and support. for another, it was about developing the endurance and resources that were necessary to sensitively guide and support a baby girl that did medically well, yet had a very prolonged hospitalization. for a third trainee, it was about the challenges of supporting a baby whose parents spent limited time in the nicu, and about the concerns that arose during the home visit. and still for another trainee, it was about creating the necessary confidence and closeness to properly support a single mother of twin girls. the construction of dialogue "give me the gift of a listening heart". —king solomon we bring our own perceptions and mental working models to the nidcap training process. as trainers, we need to be careful and have a better understanding of our trainees' perceptions, while also making our own ones explicit without assuming they would be taken for granted. the process of giving written feedback to observation write-ups provided me with an excellent opportunity to learn that. trainees seemed to be quite unfamiliar with discussing a text (the write-up) to which many margin notes and topics for reflection were added. coming, as most of us do, from formal educational systems in which the neater and less corrected a piece of work is, the better i realized they were challenged by my notes and commentaries. they seemed to think that their work might not be good enough if they got notes and remarks. that required from me to further elaborate and explain my own perception of what is a good fundament for trainer-trainee exchanges. i consider margin notes and comments as an intrinsic part of the training process. they are to be viewed as still another way to develop an open, free and creative "dialogue" between a trainee and a trainer. this might prove especially meaningful and useful when a trainee and a trainer are able to share only limited time together at the bedside or in face-to-face conversations, as is the case in many training experiences. there are actual persons behind my reflections. they are abigail, andy, adi and liat our nidcap trainees – and ita, my nidcap companion, co-trainer, and training center codirector. i have learned from them all. 8 • 2019 • developmental observer background a component of nidcap training and the final project prior to nidcap certification, is the nidcap advanced practicum (ap). this involves following the journey of a newborn infant and their family through their nicu stay, completing systematic observations and formal write-ups of their progression. the provision of feedback to nursing, medical and allied health teams as well as the newborn’s family aims to support their growth and development in the nicu. this is a reflective paper of my experience following the death of the baby i had chosen for my advanced practicum. having worked closely with the family for almost four weeks when the baby died following complications from his congenital disease, i was left feeling quite devastated. in this paper i discuss the impact of this event on my nidcap training, and my subsequent progression to a certified nidcap professional. i describe the challenges i faced following this death and have titled this paper, a bitter sweet symphony as i reflect on this experience with sadness, gratitude and hope. introducing william i would like to introduce you to william schrader, the baby i chose for my advanced practicum. william is a beautiful little boy born at 38 weeks gestation on the 13th september 2012. he entered this world after his mother had an elective caesarean section following an antenatal diagnosis of a congenital anomaly. at birth william weighed 3400 grams or 7 pounds, 5 ounces. he was born at a high risk obstetric centre and transferred to the adjoining grace centre for newborn intensive care at the children’s hospital within 24 hours following birth for management of a left congenital diaphragmatic hernia. william is the second child to parents olivia and grant and a little brother to sister elenor. i chose to work with william and his family for my advanced practicum to demonstrate the importance of having nidcap training in a surgical newborn intensive care unit as a way of supporting these complex and fragile infants. william’s story william was incredibly fragile in his pre-surgery period and required intubation and mechanical ventilation soon after birth. he also required high level intensive care including inotropes for circulatory support, nitric oxide for respiratory failure, heavy sedation and muscle relaxation to support mechanical ventilation. he was deemed stable on day four following birth which enabled him to be transferred to the operating theatre for surgical repair of his diaphragmatic hernia. william underwent surgery on the 17th september requiring a patch closure of his left diaphragm. his post-operative course was also turbulent requiring high frequency oscillatory ventilation (hfov), nitric oxide, steroid therapy, multiple inotropic drugs, heavy sedation and muscle relaxation for prolonged periods over the course of the next 20 days. he was able to be weaned from mechanical ventilation to continuous positive airway pressure (cpap) for a brief period, however his condition deteriorated requiring escalation in medical management. he required sensitive and individualised nursing care to minimise the stress and to avoid physiological fluctuations that could compromise his stability. william’s condition deteriorated further and with maximum support being offered in the nicu, he was transferred to the adjoining paediatric intensive care unit for extracorporeal membrane oxygenation (ecmo). after six days on ecmo with no improvement in his condition, and following discussions with his parents and the health care team, a decision was made to discontinue ecmo as it was deemed a futile treatment at this stage. william died on the 7th october 2012 at 24 days young in the arms of his mother being cradled by his father. an estimated 140 pregnancies are diagnosed with congenital diaphragmatic hernia (cdh) in australia and new zealand each year, with less than half expected to survive.1 being the largest referral centre in new south wales, the grace centre for newborn intensive care sees approximately 10 babies each year, with a survival rate of 97% across the nicu. advanced practicum nidcap observations i first met william and his parents olivia and grant on the 14th september 2012 when he was transferred to our unit at two days of age. i spoke to olivia and grant about the role of developmentally supportive care for babies who have had surgery, the nidcap philosophy and the nidcap advanced practicum (ap). olivia and grant were keen for william to have this opportunity so i commenced my ap working closely with them throughout william’s stay in the nicu. i completed my first nidcap observation and report that included my observations and subsequent recommendations for william’s care on this day. my further observations and reports occurred throughout his advanced practicum experience: a bitter sweet symphony kristen james nunezn, rn, mn (advanced practice) nurse practitioner and nidcap professional, grace centre for newborn intensive care, the sydney children’s hospitals network, westmead, australia william at 4 days of age developmental observer • 2019 • 9 time in the nicu. i took the opportunity to have members of my team record some videos which enabled me to adjust my recommendations for william. babies who have had surgery and/or complex medical issues often have rapid changes in their condition requiring changes in the recommendations for support. these small videos often occurred in my absence due to my work schedule and provided a quick snapshot of william that supported adjustments to my recommendations. i placed a folder at william’s cot-side [bedside] with copies of the reports and recommendations. this enabled his parents as well as the nurses caring for william to read them each day. the goal was to enable the recommendations for william’s care to be used by all staff to provide a consistent approach when his condition was quite unstable. when william was transferred to the adjoining paediatric intensive care unit for ongoing medical care and ecmo, i met frequently with olivia and grant to remain current with william’s condition and fragility. due to william’s condition and his need for such intensive medical support, heavy sedation and prolonged periods of muscle relaxation, his nidcap goals and recommendations were limited and unable to progress throughout his short life. however the benefit of observing william and discussing these observations with his parents were an instrumental focus of the ap. challenges and rewards this experience came with many challenges but also great rewards. the challenges i faced included: • time: i had a lot of things going on at the same time as my nidcap training and completing the advanced practicum component. i was completing my master of advanced practice at the university part time, in addition i was also preparing for the birth of my first child and the commitment required for my advanced practicum became stressful. • distance from nidcap trainer: this was slightly difficult with me in australia and my trainer in the usa. although i always felt supported throughout my nidcap journey, the distance between myself and joy browne, my nidcap trainer, did not allow for immediate feedback and consultation which left me feeling a little stranded. i felt in this situation i would have benefited from having my trainer closer. in addition the time difference of 15 hours made communication difficult. • unfamiliar situation: the distance was confounded further as i was not familiar with the recommendations in this situation and it was my understanding the death of a baby during a nidcap ap was a rare occurrence which left me unclear of what direction to take. i also found it difficult to articulate the relationship i had formed with the schrader family through emails, missing that face-to-face discussion and simultaneous support. • shift work: working shifts was also a challenge. at the time of this ap i worked three 12 hour shifts each week. the acute clinical work load on a specific shift sometimes meant completing nidcap observations and the write-up work required commitment outside of my working hours. • william’s medical condition: william was extremely unwell from birth to his death which placed a great deal of difficulty on completing nidcap work and was a huge personal and emotional commitment for myself. • my own personal health: i was 27 weeks pregnant when commencing this ap journey. this challenged me from a lethargy perspective as it added another component to my already busy life. my pregnancy also challenged olivia and grant as through their own stress and grief they showed great concern about the effect my commitment to william and their family may be having on my unborn child, something i had not anticipated. although difficult, the significant challenges made the rewards much more meaningful. the rewards i gained from this experience were immense: • i am incredibly proud of the relationship i formed with the shrader family . the ap work involved speaking with them about their son aside from the medical care, diagnosis and treatment, and focusing on their baby, their william. they commented often that these conversations allowed them to see through the tubes, machines and alarms forming memories they hold onto even today. following william’s death i provided them with a small video of all the movies and photos taken throughout our nidcap journey. i said my goodbyes to william when i attended his funeral, for which olivia and grant were so grateful. • professional learning and personal growth: this experience amplified to me the importance of supporting families through the medical haze of the nicu environment. it is so vitally important to support parents to have glimpses of their babies as just that, a baby, and not the ‘24 weeker’ with chronic lung disease or the term baby with multiple congenital anomalies. i will forever take this into all my interactions with parents and this remains a focus of my care. i know i have william, olivia and grant to thank for that. outcome death and dying are an unfortunate part of the nicu journey for a small number of babies and families. this experience has shown me the relationships we make with these families is the most important part of our nidcap work. the nidcap federation international (nfi) now specifically addresses the importance of this relationship with the goal of supporting nidcap trainees during their ap. “if the infant you are observing is or should become severely ill, and perhaps die, be aware of the importance of your supportive role, which becomes even more valuable in such circumstances. the family will greatly appreciate the developmentally focused input you provide and will treasure the diary of their infant. avail yourself of the guidance of the professional in your setting skilled in the support of parents who experience the severe illness or death of their child. depending on the length of the infant’s life, you may wish to observe another infant, in order to gain sufficient experience in the context of your practicum.”2 10 • 2019 • developmental observer conclusion my journey to become a nidcap certified professional came with many challenges but also immense rewards and significant learning. i take the lessons i learned working so closely with william and his family into my clinical practice each day. my role within the nicu as a neonatal nurse practitioner allows me to continue to work closely with families, guiding them through the uncertain world of the nicu and supporting them to achieve a greater understanding of their baby’s achievements. william and his family showed me the importance of celebrating each moment. i strongly believe nidcap certification and training is essential for all health care workers, as the benefits it provides to families support these newborns long after their nicu journey ends. nidcap training has become more accessible to the southern hemisphere with the establishment of the australasian nidcap training centre, opening these benefits to many more vulnerable newborns and their families. an additional benefit is having an on-site nidcap trainer to closely supervise and support trainees throughout their nidcap journey. references 1. cundy tp, gardener gj, andersen cc, kirby cp, mcbride ca, teague wj. fetscopic endaluminal tracheal occlusion (feto) for congenital diaphragmatic hernia in australia and new zealand: are we willing, able, both or neither? journal of paediatrics and child health. 2014; 50: 226-233. 2. als h. guidelines for advanced nidcap practicum: following an infant and family from admission to discharge and transition to the home. nidcap federation international. 2015. retrieved from http://nidcap.org. disclosure the images and identities used in this presentation have been included with the consent of olivia and grant schrader. william with his parents grant and olivia save the date open 1-day conference gut feeling: the other brain. exploring the connection of microbiome, stress and infant behavior open one-day conference keynote speakers amy d’agata, rn, phd university of rhode island jeffrey alberts, phd university of indiana u the last day of the nidcap trainers meeting will be an open one-day conference. the purpose of the conference is to equip the learner with the knowledge to provide high level and evidence-based, developmentally supportive care to hospitalized infants and their families. registration details coming soon to www.nidcap.org sheraton portsmouth harborside hotel 250 market street portsmouth, nh 03801 monday october 7 2019 register at: www.nidcap.org https://nidcap.org/en/programs-and-certifications/nidcap-education/one-day-conference-portsmouth-nh-oct2019/ developmental observer • 2019 • 11 during my pediatric specialty training (1975-80), i was already preoccupied by the mother infant separation in the children’s wards and in the newborn intensive care unit. at that time, fetal medicine was developing very fast and i started a very close collaboration with the obstetricians/midwives where i was working at the university hospital. our first approach to studying the behaviour of the preterm infant was to compare their intra-uterine behavior observed by ultrasound (eye movements, general movements, respiration, etc.) with sleep-wake cycles after birth by polysomnography. this was my first understanding of ontogeny of sleep in the 1980’s. in the 1980’s it was not yet understood that the proximity of mothers and babies had implications beyond the technical aspects. there were two approaches in those days: on the one hand the development of perinatal centers to keep high risk pregnancies in the proximity of well-equipped nicus. on the other hand, many pediatricians were fighting for children’s hospitals centralising pediatric expertise, especially for artificial ventilation. i tried very hard to convince the hospital authorities that sick newborns in the obstetric department needed to have building plans that included access to a nicu next to the delivery room. it took them 20 years to come to that idea on their own. i left in 1985 and moved to saint-pierre university hospital where there was no plan to move the nicu away from the delivery room. from the beginning, i shared with the vast majority of the nursing staff the need to move away from traditions like visiting hours for parents, lack of attention to pain during procedures, uncomfortable positioning and/or no respect of sleep cycles. in the late 1980’s and 1990’s, we initiated skin to skin, positioned the babies in hammocks, tried to reduce painful procedures by suppressing routine blood sampling and allowed permanent parental presence. all these approaches were quite innovative at the time. when i supported the practice of permanent parental presence, i was called by the head of the department of pediatrics asking me to stop, because he did not want it to happen in all the wards. i told him that these were the new official recommendations of the scientific societies of neonatology. that was of course not true. i bluffed and it worked! the suffering of the mother having a baby in the nicu appeared so deep to me that i started a collaboration with the psychiatrists and psychologist to have a professional vision for parental mental health support in the nicu. i also had the idea of not only diminishing pain and stress but including some policies that related to promotion of “well-being”. we started a study having babies listening to music or mother’s voice and recorded the reactions on video and observation sheets. unfortunately, because of lack of staff we could not conduct the study that would have provided relevant conclusions and publications, but we had observed that each baby had his individual pattern of response to that auditory stimulus. during those days, i realized that i had to contribute to neonatal research in a traditional way in order to insure the credibility of the unit and of the novel approaches to nicu care. my papers on nutrition and surfactant were published and i was a member of numerous scientific societies which contributed to the realization that our research was credible and necessary. simultaneously, pushed forward by jacques sizun from brest, a european group “the early developmental care network “contributed to the general sensitivities and need for culture change in the european units (see article developmental observer, vol. 3, no. 2, 2009). through this group’s efforts we conducted and nidcap profile dominque haumont phd introduction by joy browne, phd dominique haumont has been a trendsetter and a visionary when individualized, developmental care was not typical in most belgian newborn intensive care units (nicu), or for that matter, in many nicus world-wide. i have watched in amazement at how she has uniquely and sensitively brought about changes in her own hospital, in her country and in international settings. the vision of making sure babies and their mothers are never separated, her original goal, reflects an inspiration and has now been realized through her efforts over the last three decades. her novel and progressive approaches to making system change happen have been not only effective, but have given us a template for what can be achieved. they are reflective of our collective knowledge that change does not happen fast, but with perseverance and sensitivity it can be accomplished. we have much to learn from her stories of accomplishments, her perseverance and her ability to think “outside the box”. she is an enabler, a visionary and a true friend. thank you, dominique, for sharing the story of your journey with us. dominique haumont: her story of system change and implementation 12 • 2019 • developmental observer published several surveys about practices in nicus in europe. being interested in the assessment of babies’ behaviour i found a publication from björn westrup in 1997 where he described what happened in his unit in falun. he had returned from the united states (us) and introduced nidcap in europe. this approach appeared to me to be the one we needed to structure teaching of developmental care. from the beginning of implementing the newborn individualized developmental care and assessment program (nidcap) work, i wanted our unit to become a training center. it seemed the most efficient way to assure the consistency of the change we aimed for in the newborn units. my role in supporting nidcap was first finding the funding, explaining to the staff about the need for sensitive developmental care, and also explaining in national conferences why we had to change. since the beginning of the nidcap journey, i have put enormous efforts into finding the necessary funding for sending collaborators to the us, hosting nidcap and apib trainers in brussels and achieving the steps for becoming a nidcap training center. two major personal grant applications (in 1999 and 2002) gave me the necessary financial support to start building the brussels training center. as head of the neonatal unit, and also having national and international commitments i could not enter the training process myself, but i had been the translator (french-english) for many observations of the trainees. this provided me the opportunity to infuse nidcap approaches on a daily basis by integrating the new vision in organizing the care and encouraging consideration of parents to be collaborators with staff. we had all kinds of working groups among which early developmental care with a weekly discussion around specific aspects of implementing nidcap in the unit. delphine druart engaged herself in the process and appeared to have the qualities of an exceptional trainer. she consistently worked toward and was successful at becoming a nidcap professional and then a nidcap trainer. once the training center was opened, we wanted the unit to be an example to other belgian units. despite delphine being called for training in many other nicus in belgium and france, she insured and verified our level of nidcap care on a regular basis. i must say, the whole staff was very supportive of our efforts, including the obstetricians. due to the context of the different university nicus in brussels, i started with a small unit and was very close to the families. my resulting partnerships with parents have been very intense. together we created an association “neonid” to promote nidcap and familycentered care. i have been very lucky to work with neonatologists to whom i delegated the tasks in the caregiving; one of the reasons they worked in saint pierre hospital was because of the innovative approach of family-centered care. our unit and the staff grew and the unit ended up being the biggest in brussels. i became the conductor of the whole team. while we were building our training center, we experienced growing interest inside belgium and europe towards early developmental care, whether it was nidcap or something different. the variety of approaches aimed to provide proximity between families and include other elements of early developmental care. having started the movement of these approaches concretely in the nicu, i was invited to talk about our experience in many hospitals or meetings. often many visitors came to see how we had implemented our caregiving approaches. in belgium, the ministry of health appointed, by law, “colleges of physicians” to insure quality control. being a member and then the president of the college of neonatology (20082013), i had close contact with the ministry’s administration. i knew they were implementing incentives to increase breastfeeding rates by supporting the baby friendly hospital initiative (bfhi), and that mother infant closeness was accepted as being an important issue. i went several times to see our authorities where i presented the evidence for moving away from potential harmful traditional nicu environments. they understood the need for a structured tool to achieve our goals toward family centered care and agreed that the program which was the most evaluated was the nidcap approach. we obtained a four year contract (2006-2010) between the hospital and the ministry to increase the staff. once the training center was opened, other hospitals could apply for and obtain financial support to benefit from our teaching. they could combine bfhi and/or nidcap. it took roughly from 1985 to 2010 (25 years) to reach maturity of the concept. the proximity of the parents with their infant is the key issue, and without appropriate environmental supports and policies it is very difficult to apply. we started, like everywhere else, with common (often crowded) rooms and the very first fight was to obtain space for a comfortable chair for kangaroo mother care. when the nicu had to be rebuilt, the hospital directors decided to send me and some nicu parents to one of the florida conferences about nicu design which dr. joy browne was co-organizing. the newly built nicu opened in 2005. with the new design we could host mothers on a small bed in the single rooms. at that time it was quite progressive, but i already started to prepare the next step which was the concept of “couplet care” with a big family room. this process is still ongoing, but since it started, i have retired. initiating that extent of change in the nicu was not an easy task and it was very challenging. the most important chalinitiating that extent of change in the nicu was not an easy task and it was very challenging. the most important challenge to me was to be sure i was going the right direction. developmental observer • 2019 • 13 lenge to me was to be sure i was going the right direction. in the masculine world of scientific societies the issues on developmental care were not very popular. it was considered important for nurses or for emotional issues of parents but not really science. having understood that about my profession, i presented to my colleagues the impact of the different elements of edc and nidcap separately. there is scientific interest for pain, for colostrum, for effect of light and noise, for later outcomes and so forth. presenting the work in that way has proven to gain more interest. however, i still think that we cannot study nidcap easily because the sophisticated level of implementation and priorities of the program are difficult to measure. the other challenges i faced were comparable to “normal” challenges of the head of a department. as head, i continually faced personal and relationship issues within the staff. a nicu has very difficult periods when facing death, malformations, impairment, etc. it is very important to take care of emotions or feelings of patients, but the staff need special attention too, and sometimes psychological support. introducing nidcap provided positive returns from the team and i felt happy to have a happy staff most of the time. i have so many good memories of my life as head of the nicu in saint-pierre. the teamwork to provide a different way of caring is probably what made me most happy. initiatives taken by staff members and parents feeling at home are a few examples of what made me feel good. the situation has evolved, so many things which were “avantgarde” have become routine. with the foundation that i have described, the future of the training center in brussels now relies on the new team directing the unit. they will decide what they want at local, national and international level. they have the skills. personally, i am now running an international network enewborn, registering data on very low birth weight infants. i again want to move away from the traditional approach of looking at data. for instance, i think parents could, on a voluntary basis, provide information using special apps. prem (patient reported experience measure) and prom (patient reported outcome measure) could be a next step telling us how families see things. — dominique haumont brussels, may 28, 2019 i still think that we cannot study nidcap easily because the sophisticated level of implementation and priorities of the program are difficult to measure. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 14 • 2019 • developmental observer of all the advances in neonatology in the past several decades, developmentally supportive, family-centered care is arguably one of the most powerful tools for improving outcomes in countries with limited economic resources. developmental care does not require expensive technology, and rather it is based on sensitive observation, responsive hands-on care, and strengthening relationships among infants, families and caregivers. while some aspects of the highest quality, newborn individualized developmental care and assessment program (nidcap) based developmental care can be relatively costly (for example, single-room nicu design including family accommodations), resourceful and adaptive planners in developing countries are no strangers to finding creative solutions to such challenges. we have only to look at the history of kangaroo care to see strong proof of this concept, as countries as diverse as colombia, south africa and argentina have led the way in developing and implementing this critical strategy. a collaboration opportunity these issues were clearly demonstrated in a recent educational effort that this trainer was fortunate to participate in during a visit to the beautiful country of belize in the fall of 2017. belize is a fairly small independent and sovereign country located on the north-eastern coast of central america bordered on the northwest by mexico, on the east by the caribbean sea, and on the south and west by guatemala. belize is about 180 miles long and 68 miles wide on the mainland, with a population of around 370,000 people, a relatively low density. it is geographically impressive, with famous coral reefs, rain forests, and mountainous areas. the population is extremely diverse culturally, ethnically and linguistically. though the official language is english (independence from great britain was obtained in 1981), over half the population is multi-lingual, with creole and spanish spoken by many. the health care system is a complex combination of advances and limitations, with an active health ministry working hard to improve outcomes, but limited numbers of locally trained professionals available to serve the geographically dispersed population. one of the strategies currently in use is close collaboration with high-quality nonprofit agencies to provide not only direct care, but also training and professional development. the non-profit agency world pediatric project (wpp), based in the united states (richmond, virginia and st. louis, mis souri) has been a leader in this work, by coordinating visits from leading pediatric specialists from the u.s. who work closely with professionals in belize to help children with complex medical and surgical needs. wpp works with physicians and families to bring children who require specialized care to u.s. facilities (arranging visas, transportation and financial support for parents as well as children). of equal importance in wpp’s work is the facilitation of professional visits that provide intensive, person-to-person training on issues requested by the local medical staff. the physicians, nurses, and other specialists donate their time and expertise, with wpp providing logistical support and maintaining ongoing relationships with the facilities and professionals involved. (note: wpp operates in twelve countries in central america and the caribbean.) newborn care in belize one important activity for wpp in the past several years is enhancing newborn care in belize, which has one newborn intensive care unit for the entire country, located at karl heusner memorial hospital in belize city. local leaders have drawn on multiple resources, including support from such varied donors as the government of japan, to allow the construction of an immaculate and fairly spacious new facility that includes not only impressive technology but also parent sleep rooms and a roomy family lounge. additionally, the hospital has achieved babyfriendly designation and is strongly committed to breastfeeding for all infants. however, the staff of the nicu, including administrative leaders, nursing leaders, and physician leadership including belizian and cuban physicians, strongly desired to continue to improve the quality of care. they were able, with the help of wpp, to link with a number of u.s. specialists, in fields just as pediatric surgery and urology. volunteer physicians include north carolina-based neonatologist dr. claudia cadet, who has training and experience in international health. dr. cadet began her work in belize focusing on improvement in respiratory care. as she planned a return visit in close conversation with the professionals in belize, she was asked to include developmental care in the materials to be shared during her next visit. in response to this request, she included this trainer on her team, which also included an experienced nurse practitioner and a nurse educator who is actively pursuing nidcap professional status. the team was very clear that the goal of the visit was to support and strengthen the efforts begun by the local professionals, who had made a great start but wanted to continue to progress, with formal training programs belonging in the future. the visit by the team of four (all current or recently part of wakemed’s nicu) was a wonderful experience due to several key factors. a primary factor was the relationship that dr. cadet global perspectives of developmental care – belize melissa r. johnson, phd senior trainer, carolina nidcap training center, raleigh, nc, usa developmental observer • 2019 • 15 had built with the staff of wpp and the local medical team, who were able to discuss in detail what their needs were prior to the team’s visit. another factor was the caliber of the wpp staff in belize, whose understanding of the local health care system, the hospital’s history and structure, and the cultural issues impacting care, were all critical. the nursing leadership in the unit was paramount to success, with the head nurse demonstrating the qualities of leadership of her staff, dedication to quality, and motivation to strengthen developmental care that would be the envy of any nursery. it was especially striking when several supervisors, including the nurse manager, took over the care of all the infants for an hour so that the entire afternoon shift could attend a developmental care lecture. an additional key component, as is so often the case, was flexibility. for example, topics needed to be shortened or expanded depending on issues noted at the bedside (i.e. more time on issues of nutrition and a last-minute addition of a talk on developmental follow-up), and many key concepts were so much better communicated through demonstration than lecture (i.e. four-handed care). finally, we quickly discovered that the word “can’t” was not in the vocabulary of these professionals; some of the recommendations that we made fairly tentatively, not sure if they would be possible, started to be implemented before the end of the first week (i.e. dimmers on light switches). lessons learned what were some of the key lessons learned during this visit that might be useful to other nidcap professionals with an interest in sharing this work in countries not yet included? • begin by building on existing strengths, where nurseries have the creativity and motivation to push forward even with the existence of real challenges. • as always, relationships are critical, and time spent discussing local priorities and interests is perhaps even more important than when you are training in your own culture. • flexibility is everything; think of your original itinerary and curriculum as gentle suggestions to get you started, with the real schedule emerging based on what is happening that week or that day. • never assume that something is impossible; professionals in developing countries have resilience and adaptive skills, from which we have much to learn. • identify an existing organization that has experience and expertise in facilitating health care improvement in the region in which you will be working. • take advantage of the “low tech high touch” aspects of our work, such as skin-to-skin and four-handed care, as you help build confidence and capacity. in thinking about these lessons, it also appears that some of them apply to work in the trainer’s own cultural context. developing and building relationships, starting with strengths, and adapting to the unique needs of each nursery and community are important in all training and consultation activities. as the work of the nidcap federation international continues to expand throughout the world, sharing our knowledge with countries who have fewer financial resources will pay us dividends as we gain from their resources of energy, commitment and creativity. the wakemed neonatology team and belize leadership local headquarters for the sponsoring organization, world pediatric project the nursing leadership in the unit was paramount to success, with the head nurse demonstrating the qualities of leadership of her staff, dedication to quality, and motivation to strengthen developmental care that would be the envy of any nursery. 16 • 2019 • developmental observer in october 2017 we achieved our goal of becoming a nidcap training centre, this was nearly 20 years after dr. heidelise als had come to australia in 1998 to begin training in the grace centre for newborn care at the children’s hospital at westmead in sydney australia. over this time we changed trainers to dr. joy browne in 2000 and we saw many nurses, neonatologists and occupational therapists commence training. in 2008 we had our first successful nidcap professionals. in 2017 we had our first nidcap trainer – nadine griffiths. the grace centre for newborn intensive care is a quaternary service at the children’s hospital at westmead in western sydney for the state of new south wales. there are approximately 600 admissions each year of out-born neonates who require surgery in the newborn period. we work closely with the high-risk birth unit at westmead hospital across a one kilometre link bridge. we also have a close working relationship with medipole de koutio hospital centre territorial gaston-bourretin noumea, new caledonia which is a special collective of france in the southwest pacific ocean, located about 1,210 kilometres east of australia. the focus of care within grace centre for newborn intensive care is for complex newborns requiring cardiac management and surgery, general surgery and specialist medical conditions with a focus on improving outcomes, effective pain management, neurodevelopmental assessments, expert psychosocial support for families and evidenced based medical care. there are approximately 150 staff members consisting of neonatologists, neonatal fellows, registrars, nurse practitioners, clinical nurse specialists, educators, consultants, managers, occupational therapists, speech pathologists, physiotherapists, family support volunteers, social worker as well as translators, administrative and ancillary staff. there is a strong and active clinical research unit with a focus on developmental outcomes, translational research, critical appraisal and quality improvement. in 2019 there were two doctorally prepared staff, cathryn crowle and natalie fairbairn both ots and nidcap professionals. currently there are three nurses undertaking doctoral studies and the majority of nurses have a post-graduate qualification. families are very important in our nidcap training centers around the world australasian nidcap training centresydney australia nidcap professionals, kristen james nunez, jane pettigrew, nicola oste, nadine griffiths (nidcap trainer), catherine turner, joy browne (apib trainer), kim psaila, kaye spence (co-director) developmental observer • 2019 • 17 team and we have an open access policy for their participation. they are welcome during ward rounds and their contribution is encouraged. a parent advisory council was established nearly 20 years ago and has evolved in various forms. we value parent feedback and work with them on ideas for improvement. in 2018 a family support volunteer program was introduced to enable families to use the volunteers when unable to be with their baby and to entertain siblings to allow parents more one on one time with their baby when in the unit. in establishing the training centre we decided on a structure that could ensure sustainability of the centre. two co-directors, alison loughran-fowlds and kaye spence were appointed. at the same time a board of directors were appointed to oversee the work and financial costs of the centre. the current board consists of: angela casey (nurse manager), robert halliday (neonatologist representative), kristen james nunez (nidcap professional representative), cathryn crowle (allied heath representative), eleni gerassis (parent representative), nadine griffiths (nidcap trainer), gordon thomas (head, department of surgery), daphne d-cruz (neonatologist for external organisation) and donna waters (dean, sydney nursing school, sydney university). the meetings are held quarterly and chaired by the co-directors. the centre is very active and, since establishment in 2017, there have been six successful nidcap professionals complete their training. nidcap training is planned on a tier system with applicants required to have completed both fine 1 and fine 2 prior to commencement. to date 13 fine 1 courses have been delivered with 435 participants from all eight states and territories as well as indonesia. six fine 2 programs have been held with 46 participants. the fine programs are taught and mentored by nidcap professionals under the leadership of the trainer nadine griffiths. the centre has a facebook page and webpage which is very active and used to promote the work of the centre, nidcap and developmental care strategies. exciting strategies are used to ensure all babies, families and staff are aware of specific benefits based on scientific evidence. initiatives include ‘light it purple’ for world prematurity day, kangaroo-a-thon, reada-thon, mothers’ day, as well as a monthly newsletter with updated information. we are actively involved in fundraising initiatives supported by eleni gerassis, our parent representative. staff and families have participated in the race for grace (keeping stationary bikes running for 24 hours), auctions and gala balls. we are very proud of our staff and this year nadine griffiths (nidcap trainer) received the coveted consumer award at the annual hospital awards. we aim to be actively involved in the nidcap federation international and kaye spence has served on the board of directors and is the current senior editor for the developmental observer. our team has attended most nidcap trainers meetings and has contributed with many presentations over the years. last year we were delighted to have joy browne become an affiliate of the centre as an apib trainer. our goals for the future are to continue to develop and expand as resources allow. we are planning for a second trainer to enable the training program to expand to other centres. there is considerable interest in nidcap and we are currently looking at unit design as we plan to move into a new unit in a new building in 2021. this gives the opportunity to redefine our focus to ensure neuroprotective care remains not only our focus but that of the organisation’s administrators and government ministers. parents are actively involved in their baby’s care cathryn crowle, ot (nidcap professional) assessing oscar at 3 months follow-up. t h e s c i e n c e d e s k in 1933, the lone ranger was a favorite on u.s. radios. in 1946, the show debuted on the new medium of television and became a cultural icon in the states. the lone ranger character was a mysterious, heroic cowboy. he wore a black mask and did good with humble anonymity. at the end of each episode, after a successful, selfless exploit, as our hero rode off on his white steed with his trusted indian companion, grateful townspeople would ask, “who is that masked man?” there seems to be an emerging realization that fathers of babies in the nicu are lone rangers. they are little known, but heroic. babies hold center stage in the nicu, often with a mom that becomes known, understood, and integrated into the daily routines. the dad is more likely to be off stage, in the wings, and kind of mysterious. in my experience, fathers of babies in the nicu are often “hard to read”. it is as if they are behind a mask. who is that masked man? cyr-alves, macken, and hyrkas (2018) describe our woeful state of knowledge about fathers of babies in the nicu. there is little systematic information. so they turned to a 51-bed nicu study site in the northeast of the u.s., where they probed into phenomena of stress and depression among nicu fathers. they studied 104 dads, beginning with their infants’ admission to the nicu (time (t) 1), then 3 weeks later (t2), again at discharge (t3), and finally 2 months after discharge (t4). at each of the four time points, trained staff administered two, oft-used questionaires. the specific tools used were the parental stress scale (pps), an 18-item, self-report questionnaire, and the 10-item edinburgh postnatal depression scale (epds), also a self-report questionnaire. because each father was tested at each time point, the data describe stability and change over time for each subject and, thus comprises a longitudinal study. this was practically the first of its kind. the pss expresses level of stress with a composite score that can range from 18 -90. in the hands of previous researchers, a score of 43 or more was indicative of “high” level of stress. in the present study, the average stress levels reported by the nicu fathers was a moderate, 32. statistically, there was no overall change in reported stress levels from t1 and t4, but the authors dug more deeply into the numbers and found that significantly more fathers scored as highly stressed (above 43) at t1 and at t4, suggesting that circumstances surrounding admission to the nicu and when the baby is settling into the home, can bring notable challenges. the researchers sought to measure the incidence of depression in nicu fathers and assayed for symptoms with the epds. fathers in the present study consistently produced low average scores, suggesting no depressive symptoms. again, the authors looked more deeply into the results by asking about the frequency of depressive symptoms – for this can get lost if we look only at averages. they found that 41% of the fathers reported minor signs at t1; 16% showed major symptoms at that time. amid the statistical metrics in this paper, “chronbach’s α” was used and this ominous-sounding term might need explanation. chronbach’s α represents the degree to which there is internal consistency between different tests or test items. the idea is that such consistency indicates that the tests are measuring the same construct, implying reliability and accuracy. according to conventions guiding interpretation of such scores, chronbach’s α in the present study scores indicated “satisfactory” internal consistency. in all, this thoughtfully-designed and well-reported investigation identified only modest representations of stress and few symptoms of serious depression. i think one can detect some surprise in the authors, which i found comforting, because i was shocked. the stress and depression scores do not correspond to the severity of the babies’ condition or to the realities of the impact of having a newborn requiring intensive care. why might this be? the authors considered a range of possible explanations, including a subject population lacking diversity, unknown psychological status of each father before the baby’s hospitalization. they acknowledge that self-reports are susceptible to modifications shaped by social expectations. for these or other reasons, these tests were not sensitive to reflect fathers’ experiences or were incompatible with the dads’ abilities to report their condition. i believe that this is an important and valuable research report. although the findings were mostly ‘negative’, meaning they didn’t reveal big effects, this is not failure. the research question is not whether nicu dads are stressed or get depressed, it is how do we recognize and measure the important elements that comprise the fathers’ stressed and depressed conditions? these are vital matters of well-being, also important to the health of the mother, the strength of the parental bonds, and to the development of the infant. once more sensitive measurements are identified, it will be advantageous to incorporate a control group to learn more about the tests and, importantly, to learn more about how nicu fathers differ from new fathers with healthy babies. do they show target article: cyr-alves, h., macken, l. and hyrkas, k. (2018) stress and symptom of depression in fathers of infants admitted to the nicu, journal of obstetric, gynocologic, and neonatal nursing, 47: 146-157. “who is that masked man?” jeffrey r. alberts, phd indiana university, nfi science committee, associate editor for science 18 • 2019 • developmental observer developmental observer • 2019 • 19 more or different kinds of stress or depression? how much more? carefully constructed, matched sample controls will someday be a useful part of a serious, systematic analysis of these important questions. when these fathers are better understood, it will be possible to develop and validate interventions and protections for them. more and different populations must be included. there is much to be learned about fathers in different cultures and different health care systems. we are at a most fundamental, basic starting place. we are just beginning to ask, what is behind that mask? what is hurt and what is intact? what can we provide to facilitate his fatherhood and through the derived benefits to mother, buttress a loving family that will help a sick baby recover and travel on a healthy developmental path? model of the nidcap nursery: from self-assessment to nidcap nursery certification (deborah buehler, phd, sandra kosta, ba, heidelise als, phd, september 2018) the figure graphically describes the relationship of training and support opportunities to nursery change from conventional care to consistently well-integrated nidcap care. it depicts the roles and relationships of newborn nursery components and the support opportunities offered to nursery professionals and staff engaged in this change process. the infant and family are depicted at the nursery’s core, cared for by the professionals and staff within the nursery and hospital. the hospital is understood as part of a greater community, a community from which infants and families come and to which they hope to return. the core of the figure shows the infant-parent relationship as it moves from one of infant isolation from the parents (conventional care; bottom) to one of full emotional and physical integration of infant and parents (nidcap care; top) within the nursery. the gold standard for excellence in newborn individualized developmental care model of the nidcap nursery supports for nursery change continued mentorship for self-assessment, reflection, education and training nidcap & apib training for core teams and nursery assessment review introductory/ foundational education (e.g., nfi nursery foundation education, fine, and other nfi-endorsed conferences & courses) for all professionals & staff interdisciplinary (incl. parents) goal setting and planning d. buehler, s. kosta, h. als© nidcap federation international, march 2018 nursery self-assessment: identification of strengths & challenges process of nidcap care implementation highly attuned nidcap care nursery certification consistently well-integrated nidcap care variable nidcap care nidcap beginnings conventional care family professionals & staff hospital & nursery professionals & staff nursery & hospital family infant & parents parent parent key: newborn commun ityc o m m unity philosophy & implementation of care 20 • 2019 • developmental observer p u b l i s h e d r e s o u r c e s 2 0 1 8 2 0 1 9 1. makris nf, vittner d, samra ha, mcgrath jm. the preemi as a measure of parent engagement in the nicu. applied nursing research 2019, 47: 24–28. individualizing the infant's plan of care, can support mothers and fathers to attain the confidence and skills necessary to manage their infant's care: which introduces the concept of self-management in the nicu. using the preemi instrument to assess engagement has the potential to promote collaboration and communication with the health care team that emphasizes individualized care that is personal, holistic, and comprehensive while at the same time identifying and supporting at risk parents. 2. mirlashari j, fomani fk, brown h, tabarsy b. nurses' and physicians' experiences of the nidcap model implementation in neonatal intensive care units in iran. journal of pediatric nursing: nursing care of children and families 2019, 45: e79–e88 this qualitative study highlights how nidcap provides a comprehensive and effective care model for premature infants, with the goal to promote neonatal growth and development while also facilitating the self-efficacy of caregivers. implementation of the nidcap model requires attention to the social context, infrastructure, the facilities and resources of each country, and the needs of caregivers. health care resources are required to sustain nidcap specialists and a favourable environment is necessary for its multidimensional application across nicu’s around the world. 3. dall'oglio i, mascolo r, tiozzo e, portanova a, fiori m, gawronski o, et al. the current practice of family-centred care in italian neonatal intensive care units: a multicentre descriptive study, intensive and critical care nursing, 2019, 50: 36-43. a multi-centered study showed a variability in the organization of family-centred care practices in italian neonatal intensive care units and the need to involve parents as partners in their infant’s care team. although family-centred care is considered important by italian neonatology healthcare professionals, much remains to be done to improve family-centred care practices in newborn intensive care units in italy. 4. segers e, ockhuijsen h, baarendse p, van eerden i, van den hoogen a. the impact of family centred care interventions in a neonatal or paediatric intensive care unit on parents’ satisfaction and length of stay: a systematic review. intensive and critical care nursing, 2019 50: 63-70. there was strong evidence for a significant decrease in length of stay when parents were participating in caring for their infant in a newborn intensive care unit. moderate evidence was found in parents’ satisfaction, which increased when collaboration between parents and professionals in a newborn intensive care unit improved. however, studies performed in a paediatric intensive care setting were of weak to moderate quality and were too few to show evidence regarding parents’ satisfaction and length of stay. 5. turan t, erdoğan c, serap ceylan s. the validity and reliability study of turkish version of the fathers’ support scale: neonatal intensive care unit. intensive and critical care nursing. 2019, 50: 125-130. fathers whose infants are cared for in the newborn intensive care unit have negative experiences and thus require support. this study was carried out with the aim of performing a validity and reliability study of the turkish version of the “father’s support scale: neonatal intensive care unit” (fss: nicu). it was found that the turkish version of the fss: nicu was a valid and reliable measurement tool. 6. skene c, gerrish k, price f, pilling e, bayliss p, gillespie s. developing family-centred care in a neonatal intensive care unit: an action research study. intensive and critical care nursing, 2019, 50:54-62. understanding the context of the neonatal unit can support cultural change when change is actively facilitated and owned by the staff concerned. acknowledging parents as the main caregiver can be challenging for nurses and they require support and education to enable them to manage the changes necessary to provide family-centred care. 7. benzies km, shah v, aziz k, lodha a, misfeldt r. the health care system is making ‘too much noise’ to provide family-centred care in neonatal intensive care units: perspectives of health care providers and hospital administrators. intensive and critical care nursing. 2019, 50:44-53. this qualitative study found that the health care system was making ‘too much noise’ for health care providers and hospital administrators to provide family-centred care in ways that would benefit infants and their families. recommended improvements included: refining staffing models, enhancing professional development, providing tools to deliver consistent care, recognising parental capability to be involved in care, strengthening continuity of care, supporting families to be with their infant, and designing family-friendly environments. 8. mitha a, piedvache a, glorieux i, et al; for the epipage-2 neurodevelopmental care writing group. unit policies and breast milk feeding at discharge of very preterm infants: the epipage-2 cohort study. paediatric perinatal epidemiology, 2019;33:59–69. in total, 47.2% of very preterm infants received breastmilk at discharge (range across units 21.1%-84.0%). unit policies partly this is a selection of recent publications relevant to nidcap. developmental observer • 2019 • 21 explained this variation. breastmilk feeds (bmf) at discharge was associated with kangaroo care (adjusted odds ratio (aor) 2.26 (95% confidence interval (ci) 1.40, 3.65)), with policies supporting bmf initiation (aor 2.19 (95% ci 1.27, 3.77)) and maintenance (aor 2.03 (95% ci 1.17, 3.55). adopting policies of higher performing units could be an effective strategy for increasing breastfeeding rates at discharge among very preterm infants. 9. baghlani r, hosseini mb, safaiyan a, alizadeh m, arshadibostanabad m. neonatal intensive care unit nurses' perceptions and knowledge of newborn individualized developmental care and assessment program: a multicenter study. iranian journal of nursing and midwifery research 2019,24:113-7. this cross-sectional study was conducted on 120 nurses working in iranian nicus of alzahra, taleghani, and children hospitals affiliated with the educational and treatment centers of tabriz university of medical sciences as well as 29 bahman hospital affiliated with tabriz social security organization. the results of this study showed that the majority of nurses participating in the study had high knowledge about nidcap. 10. lisanti aj, vittner d, medoff-cooper b, fogel j, wernovsky g, butler s. individualized family-centered developmental care an essential model to address the unique needs of infants with congenital heart disease. journal of cardiovascular nursing: 2019, 34 (1):85–93. the incorporation of individualized family-centered developmental care (ifdc) interventions is essential for the infant with cchd and should be a standard of care. applying ifdc with a recovery perspective in all aspects of caregiving will provide opportunities for individualization of care and parent engagement, allowing infants in the cicu to recover from surgery while supporting both shortand long-term neurodevelopment. 11. finch-edmondson m, morgan c, hunt rw, novak i. emergent prophylactic, reparative and restorative brain interventions for infants born preterm with cerebral palsy. frontiers in physiology. 2019;10:15. this review discussed the emerging prophylactic, reparative, and restorative brain interventions for infants born preterm, who are at high risk of developing cerebral palsy. the authors examined the current evidence, considering the timing of the intervention with relation to the proposed mechanisms of action. the description of the development of novel markers of preterm brain injury, which will undoubtedly lead to improved diagnostic and prognostic capability, and more accurate instruments to assess the efficacy of emerging interventions for this most vulnerable group of infants. 12. schenk k, stoffel l, bürgin r, et al. the influence of gestational age in the psychometric testing of the bernese pain scale for neonates. bmc pediatrics. 2019;19(1):20. the modified bernese pain scale for neonates (bpsn) that includes facial expression, crying, posture, and heart rate is a reliable and valid tool for assessing acute pain in full-term and preterm neonates. the results of this study suggest that adding different cut-off points for different ga-groups will improve the bpsn’s clinical usefulness. 13. chuang lj, wang sh, ma mc, lin cn, chen cl, huang mc. a modified developmental care bundle reduces pain and stress in preterm infants undergoing examinations for retinopathy of prematurity: a randomised controlled trial. journal of clinical nursing. 2019, 28(3-4):545-559. the modified developmental care bundle included environmental modifications, positioning and containment, oxygen supplementation, interaction and approach and cue-based individual care, were applied before, during and after the rop examination. results showed a bundled developmental care intervention significantly reduced pain and stress responses and the time needed for infants to recover their physiological status following the procedure. since the results show the benefits of developmental care in an rop examination, it can be the practical evidence basis by which to develop a standard of procedure or guideline for clinical practice. 14. liao jh, hu rf, su lj, wang s, xu q, qian xf, he hg. nonpharmacological interventions for sleep promotion on preterm infants in neonatal intensive care unit: a systematic review. worldviews on evidence-based nursing. 2018, 15(5):386-393. nonpharmacological interventions included the newborn individualized developmental care and assessment program (nidcap), music, non-nutritive sucking, touch, cycled light, co-bedding, rocking, oral sucrose, remolding mattresses, and family nurturing. the meta-analysis of 36 studies showed that: 1. nidcap had no significant effect on total sleep time efficiency (tst%; p = .34); 2. mattress interventions had significant effects on tst% (p < .001); and active sleep efficiency (as%; p = .006) but no significant effect on quiet sleep efficiency (qs%; p = .75); 3. cycled light increased tst (p = .02); and 4. co-bedding had no significant effects on qs% and as% (p = .63 and p = .88, respectively). remolding mattresses and cycled light had significant effects on sleep promotion in preterm infants, but the quality of the evidence was very low. further high-quality studies are needed to strengthen this evidence. 15. masri s, ibrahim p, badin d, khalil s, charafeddine l. structured educational intervention leads to better infant positioning in the nicu. neonatal network journal of neonatal nursing. 2018, 37(2):70-77. a quality improvement (qi) project was initiated to increase knowledge and improve the compliance of 39 nurses and 52 physicians in infant positioning using the infant positioning assessment tool (ipat). the project was part of newborn individualized developmental care assessment program (nidcap) training. the mean knowledge assessment test score improved significantly for both nurses (p < .0001) and residents (p < .0001) post intervention; ipat scores increased significantly from 3.4 (+/-2. 5) to 8.1 (+/-2.7) (p < .001). nurses' education 22 • 2019 • developmental observer with hands-on practice improved infant positioning in the nicu; this may lead to fewer positional deformities and possibly an improved developmental outcome. 16. poets cf, wiechers c, rudiger m. optimal discharge of very immature preterm infants: current evidence and own approach. <optimale entlassung sehr unreifer fruhgeborener: aktuelle evidenz und eigenes vorgehen.> monatsschrift fur kinderheilkunde. 2019, 167, 1:26-33. discharging very immature preterm infants requires maintenance of a normal body temperature, full feeds and an adequate weight gain and no relevant hypoxia/bradycardia. in addition, considerations for discharging the baby on a home monitor or caffeine, sociomedical aftercare and nutritional status. breastfeeding with a fortifier is optimal for nutrition; which is promoted from birth, e.g. by early skin-to-skin contact and baby-driven feeding. breastmilk supplementation may also be indicated after discharge. interdisciplinary aftercare is essential to guarantee treatment success and to avoid re-admission. measures to increase parental competence, such as the newborn individualized developmental care and assessment program (nidcap) should be initiated prenatally and immediately postnatally in order to enable an early discharge. 17. godarzi z, zarei k, shariat m, sadeghniat k, nikafs n, sepaseh h. correlations of handling procedures and sleep patterns of the infants admitted to the neonatal intensive care unit. iranian journal of neonatology. 2018, 9 (3):35-41. this observational cross-sectional study has a sample population of 15 preterm infants, and duration of the handling procedures was 15 days or 360 hours. handling procedures were recorded within an uninterrupted 24-hours period. sleep patterns of the infants were checked at 8 am 8 pm using als' behavioral states scale of newborn individualized developmental care and assessment program (nidcap) observation sheet. according to the results, supportive handling could increase sleep duration in preterm infants. therefore, it is recommended that this technique be applied for the comfort of preterm infants in the presence of parents. 18. berne-audeoud f, marcus l, epiard c, debillon t, ode c, nidcap g. nidcap: appropriate care for preterm infants and their families, because their future is a challenge. <le nidcap: des soins sur mesure pour les bebes prematures et leur famille, car leur avenir est un defi.> anae approche neuropsychologique des apprentissages chez l'enfant. 2018, 30 (152):63-69. the current challenge aims to provide care that enables preterm infants to reach their optimal cognitive, psychomotor and emotional development. nidcap is an early and individualized program based on systematic observations of the infant's behavior in order to provide recommendations of care for each infant and their family. it is one of the few programs scientifically validated and approved by families and associations for its beneficial impact on the infant and his/her family. 19. gardner fc; adkins cs; hart se; travagli ra; doheny kk. preterm stress behaviors, autonomic indices, and maternal perceptions of infant colic. advances in neonatal care. 2018, 18(1):49-57. thirty preterm (mean +/se = 32.7 +/0.3 weeks postmenstrual age [pma]) infants underwent direct nidcap (newborn individualized development care and assessment program) observation during routine care and had hrv measurements during their first week post-birth. sixty-three percent of mothers completed the infant colic scale at 6 to 8 weeks adjusted postnatal age. nonparametric tests were used to determine associations among behaviors, hrv, and maternal perceptions of infant colic. self-consoling behaviors were positively associated with hf-hrv (vagal tone). stress behaviors were positively associated with low-frequency/high-frequency hrv (sympathetic dominance). infants who displayed more stress behaviors also demonstrated more self-consoling behaviors. hf-hrv provides information on the infant's capacity to modulate stress and is a useful, noninvasive measure when behaviors are more difficult to discern. 20. kugelman a, borenstein-levin l, jubran h, dinur g, bendavid s, et al. haddad j. less is more: modern neonatology. rambam maimonides medical journal. 2018, 9(3):30. risk factors for iatrogenesis in nicu include prematurity, mechanical or non-invasive ventilation, central lines, and prolonged length of stay. less invasive strategies such as delayed cord clamping, no routine suction for the airways for meconium-stained fluid, lower levels of oxygen saturations were used during the first 10 minutes of life. endotracheal ventilation is avoided and noninvasive respiratory support of continuous positive airway pressure is started in the delivery room. non-invasive methods of surfactant administration are utilized. the shorter duration of central lines, and early feeding of human milk is routine. "kangaroo care" and newborn individualized developmental care and assessment program (nidcap) together with a calm atmosphere with parental involvement are encouraged. call for expression of interest to join the editorial team we are calling for expressions of interest from nfi members to join the editorial team. we would like global representation. email senior editor kaye spence at: developmentalobserver@nidcap.org developmentalobserver@nidcap.org developmental observer • 2019 • 23 the developmental observer is the official newsletter of the nidcap federation international. we would like to receive submissions from the membership on any topic related to nidcap work either training, experiences or on the broader issues that support our work. we will also consider creative works that reflect nidcap work. if you have an idea please let me know and we can work through the submission process. if english is not your first language we can help with some of the language issues. the developmental observer is an open access on-line newsletter available on the nfi website for members as well as other visitors to the site. it may also be distributed by other networks and lists. it is indexed and archived through scholarworks at indiana university, usa. copyright remains with the author. all articles are to be submitted to the senior editor kaye spence am via the email developmentalobserver@nidcap.org. you will receive acknowledgement of your submission. an editorial review process occurs and once complete you will be notified of publication of your article. article submission guidelines title of your article/story name of the author(s) and professional credentials organization and/or affiliation an email contact address and a whatsapp contact if available. submitted in ms word arial font– size 12 pitch double spaced number each page word length – 800 – 1500 words pictures 300dpi (please ensure you have permission to use and include a statement indicating this). diagrams, graphs and tables (embed in your document and send as a separate file) we would also like to receive 'letters to the editor' for publication. these can be between 50-150 words. developmental observer submission guidelines nidcap care in the momentour sponsors dr. brown’s® medical is devoted to developing feeding products designed to support positive, long-term outcomes that allow for evidence-based, safe and cost-effective care. skilled neonatal care providers along with developmental feeding specialists rely on dr. brown’s® products at each feeding as they foster parental confidence and infant feeding skills for a smooth transition home from the nicu. dr. brown’s® medical vision statement is to be the global leader in infant and children’s evidence-based feeding solutions by providing products, support and education for caregivers. for more information contact a dr. brown’s medical liaison at medinfo@drbrownsmedical.com family developmentalobserver@nidcap.org 24 • 2019 • developmental observer developmental observer the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org 2019 vol. 12 no. 2 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “we are all visitors to this time, this place. we are just passing through. our purpose here is to observe, to learn, to grow, to love… and then we return home.”australian aboriginal proverb in conversation with heidelise als kaye spence, ami n may this year i had the opportunity to have a conversation with dr. heidelise als in auckland, new zealand as she was the invited keynote speaker at the council of international neonatal nurses (coinn) 10th international conference. it was such an honour to have her speak and network with over 400 neonatal nurses from 23 countries. in a quiet corner of the hotel café we had a most enjoyable conversation. as heidelise sipped on her cappuccino she shared many stories, reflections and insights into nidcap and the impact it has on newborn infants and their families. i learned so much about this remarkable woman and the passion that has shaped her life. i would like to share parts of this conversation as i asked about her experience at the conference to trigger some thoughts about nidcap.ks: after three intense days at the conference would you like to share your overall impressions? ha: when i was invited and saw the conference theme, enriched family – enhanced care, i knew i wanted to attend. it was so in tune with the philosophy of nidcap. i was greetings from the editor it is with pride that i present this issue of the developmental observer. it has been a fascinating few months for nidcap and in this issue we showcase the expansion of the global work of nidcap. earlier this year i had the pleasure of attending the coinn (council of international neonatal nurses) international conference that was held in auckland, new zealand. this time it was particularly memorable as dr heidelise als was one of the invited keynote speakers. i must say heidi was in her element as nurses from many of the 23 countries represented sought her out for photographs and short conversations. she was always surrounded by groups of enthusiastic nurses, many of whom had studied her work in their university courses and knew what an honour it was to meet her. i took the opportunity to have a conversation which is included in this issue. this was enlightening for me as i have known heidi for nearly 20 years and yet this conversation revealed a different side to her. this issue also features stories about nidcap training, from the point of view of a novice nidcap trainer and a nidcap trainee challenged by her advanced practicum. these stories from dalia silberstein and kristen james nunez challenge us to think about our own practice and training. hopefully these stories may encourage others to share theirs. we also feature a profile on dominque haumont who provides us with table of contents dr. als giving her keynote address at at the council of international neonatal nurses (coinn) 10th international conference. continued on page 2 continued on page 3 nidcap ® is a registered trademark of the nfi, inc. ©nidcap federation international, 2019. nidcap federation international board of directors and staff 2018–2019 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: deborahbuehler@comcast.net vice president dorothy vittner, rn, phd senior nidcap trainer director, carolina nidcap training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md senior nidcap trainer director, sophia nidcap training center email: n.conneman@erasmusmc.nl mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com james m. helm, phd nidcap senior trainer email: jimhelm27@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, md nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu http://nidcap.org/en/nfi-news/developmental-observer-the-official-newsletter-of-the-nfi/ developmental observer • 2019 • 25 nidcap on the web the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap training centers – facebook pages many of the training centers and nidcap groups have established their own facebook pages. these pages provide useful resources for members and by joining the groups and sharing the pages you are helping to spread information about nidcap. here are a few to get you started. if you know of others please send an email to developmentalobserver@nidcap.org and let me know for inclusion in the next issue. follow us on all of our social media platforms: like us on facebook follow our posts on pinterest watch our videos on you tube connect with colleagues on linkedin read and participate on our nidcap blog follow us on twitter http://nidcap.org/blog/ sandra.kosta@nidcap.org developmentalobserver@nidcap.org https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.facebook.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.facebook.com/nidcap https://www.pinterest.com/nidcap/ https://www.youtube.com/user/nidcapfi https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international http://nidcap.org/blog/ http://nidcap.org/blog/ https://twitter.com/nidcap https://www.facebook.com/nidcap-france-224651964347914/ https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829 https://www.facebook.com/nidcap/ https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829 https://www.facebook.com/nidcapaustralia/ https://www.facebook.com/nidcapkarolinska https://www.facebook.com/nidcapporto.s.joao 26 • 2019 • developmental observer first annual world nidcap day! this year, march 20th marked the first official world nidcap day. this is an exciting new tradition for our nidcap federation international organization and its supporters. world nidcap day (and month) is an opportunity to raise awareness of nidcap and to celebrate the incredible work that is being done every day around the world by nidcap professionals, trainers and supporters to improve the experience of hospitalized infants and their families. please see our website for more information and for images of the many of the nidcap celebrations held around the world. we invite you to join, celebrate and promote nidcap care next march and throughout the year to be a part of our powerful global community shaping the future for premature and ill infants and their families. developmental observer • 2019 • 27 biophysiology of human interaction on the environment of care for high risk newborns provided by: save the date: march 4-7, 2020 call for abstracts: due monday, october 28, 2019 visit www.thegravensconference.com sheraton sand key clearwater beach, florida march 4-7, 2020 the 33rd annual gravens conference annual nfi membership meeting sunday, october 6, 2019 2:20pm – 4:20pm sheraton portsmouth harborside hotel 250 market street portsmouth, new hampshire, usa the 30th annual nidcap trainers meeting october 5-7, 2019 sheraton portsmouth harborside hotel 250 market street portsmouth, new hampshire, usa hosted by jim helm on behalf of the nidcap federation international (by invitation only) upcoming other conferences www.nidcap.org nidcap training centers become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: dorothy vittner, phd, rn, chpe email: dvittner@wakemed.org nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, rn, mn contact: nadine griffiths aust nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be denmark danish nidcap training and research center aarhus university hospital, aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn email: aagaard@clin.au.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.broghammer@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com the netherlands sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy@uclh.nhs.uk middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il http://nidcap.org/en/about-us/membership-overview/ 8 • 2022 • developmental observer p r e s e n t e d a b s t r a c t s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 tyebkhan jm 1,2,3 1 stollery children’s hospital 2 dept of pediatrics, university of alberta 3 edmonton nidcap training centre canada (entcc). background the assessment of preterm infants’ behavior (apib) is a structured, neurobehavioural examination that objectively measures neurobehavioural functioning. preterm infants who have received nidcap care have improved neurobehavioural outcomes by apib scores; these apib measures correlate with developmental function at older ages. reliability in apib administration and scoring is required for certification as a nidcap trainer. the examination requires time, physical and emotional energy on the part of the examiner, who facilitates the infant into his / her most responsive, modulated state. infant response patterns must be clinically relevant, although we do not know if apib is used in this way. aims i will present my experience of ‘clinical apib’ and the surprising benefits for babies, families, and staff, and for the nicu system. i hope to promote interactive discussion about clinical use of this informative instrument. relevance to nidcap apib helps us see infant neurobehaviour “in 3d”, making the nidcap observation simpler, while revealing more detail. if more nidcap professionals/ nicu staff know the apib, this will positively impact nidcap training and thus directly affect the physical environment and the care of the infant, family and staff. methods apib is structured in six sections (“packages”), some of which are directly applicable to the infant’s everyday experience in the nicu. replace with for example, package 1 assesses responses to light and noise, during sleep. the clinical question is “how does this baby sleep, in this bedspace, within this nicu”. package 2 assesses responses to being unbundled and turned supine – which occurs repeatedly during diaper changes. package 6 evaluates social attention and interaction; directly relevant to feeding and interactions with parents. apib exams were done at different time points during infants’ nicu stays. some exams were video recorded, if parents consented. apib exams were done at bedside, or in a quiet, dark room. parents were invited and informed about the exam flow, time required and what to expect of their babies. at times, parents were invited to participate in package 6 (social interaction). parents were provided narrative summaries with suggestions for caregiving, similar to a nidcap report. results all babies demonstrated neurobehavioural strengths. some were surprising: e.g., a severely asphyxiated, “completely unresponsive” infant oriented to mother’s voice when guided to speak in synchrony with the baby’s unique neurobehavioural thresholds. other surprising strengths included habituation to light and noise, and the quality of sleep. staff education was enhanced as a result. apib led to fewer investigations and interventions, and earlier discharge. for example, (a) home oxygen for a late preterm infant who was having more frequent apnea and desaturations. apib done with parents helped guide “in synchrony” caregiving and feeds; apnea resolved, and baby was discharged home, without oxygen, 2 days later. (b) three preterm infants who had early post-hemorrhagic ventriculomegaly were felt to be appropriately responsive for age; neurosurgery was avoided (n = 1) or delayed (n = 2). apib allowed early detection of neurologic findings, e.g asymmetry of movement and /or unusual patterns of tone not detected by others, leading to early intervention referral. conclusions clinical apib revealed neurobehavioural strengths and challenges that had otherwise been missed. clinical apib led to changes in clinical care and use of nicu resources. the apib examination in the nicu: its clinical use doi: 10.14434/do.v15i1.33780 “congratulations to the organizing committee led by fatima clemente and jean powlesland.” nidcap trainers meeting feedback 10 • 2019 • developmental observer newborn individualized developmental care (nidcap) is the gold standard of early intervention training. unfortunately, despite intense efforts to disseminate this program, the training is not accessible to a large proportion of neonatal professionals due to high costs, duration of the training, and supportive systems organization. aims/purpose to offer different types and levels of training for neonatal professionals. methods training programs have been selected if the intervention is cuebased and family-centered, has an acceptable level of evidence and is in agreement with the nidcap philosophy. the brest training center is offering: introduction to patientand family-center developmental care (two days) created by nathalie ratynski and jacques sizun in 2000. family and infant neuro-developmental education1 (fine) (level ii: practical skills) created by nikk conneman, monique oude reimer, esthervan der heijden and inga warren (12 weeks) the support of feeding for fragile infants (soffi)2, created by erin ross and kathleen philbin (two days) the newborn behavioral observation (nbo)3 (two days) a clinical relationship-building tool derived from the newborn behavioral scale (nbas, yvette blanchard as trainer) the infant behavioral assessment and intervention program (ibaip)4, (three one-week sessions during one year) created and trained by rodd hedlund (part of a randomized controlled trial) results/findings short training programs could be considered as an introduction to the nidcap training; thousands of professionals from french-speaking nicus (level ii or iii), maternity units or follow-up clinics or private medical offices have been trained with a high satisfaction level; this catalogue offers an opportunity to reach people working outside the level iii nicus; and short courses trainers could be future candidates to become nidcap trainers conclusion this strategy participates to the financial stability, the independence and the sustainability of the brest nidcap training center. references: 1. www.bliss.org.uk/health-professionals/training-and-events/the-fine-programme 2. cross, es, philbin mk. supporting oral feeding in fragile infants: an evidence-based method for quality bottle-feedings of preterm, ill, and fragile infants. journal of perinatal neonatal nursing 2011; 25(4): 349–359. 3. barlow j, herath ni, bartram torrance c, bennett c, wei y. the neonatal behavioral assessment scale (nbas) and newborn behavioral observations (nbo) system for supporting caregivers and improving outcomes in caregivers and their infants. cochrane database systematic reviews. 2018;3:cd011754. 4. verkerk g, jeukens-visser m, koldewijn k, van wassenaer a, houtzager b, kok j, nollet f. infant behavioral assessment and intervention program in very low birth weight infants improves independency in mobility at preschool age. journal of pediatrics 2011;159(6): 933-8.e1. diversification of developmental care trainings: how and why? ratynski na, minguy sa, olivard i, sizun jb anidcap trainer, bcenter director, brest nidcap training center, brest, france. developmental observer • 2021 • 9 background innovations, step three in the fine training pathway1 for infant and family centred developmental care, explores systems organisation, and includes a quality improvement project to give students experience of change management processes. this project took place in a level iii nicu in a large urban centre with supervision from senior fine faculty with change management experience. aim hospitalised preterm and sick infants are exposed to many painful and stressful events. repeated pain and stress may have long-term consequences for neurodevelopment2 and in many situations nonpharmacological interventions are the first line of protection.3 this project aimed to improve the use of non-pharmacological pain and stress management strategies by 50% over a period of 6 months (july – december 2019) using the evaluation of intervention (evin)4 scale to train staff and evaluate practice. methods the project was carried out in an eight bed high dependency unit with three to four nurses attending per shift. the project lead (who had completed fine 2) trained a core team of fine 1 educated staff to score the evin at the bedside. the evin measures the quality of non-pharmacological pain management during caregiving or medical procedures. inter-rater reliability was checked. the selected intervention was heel lancing which was the most used method of blood sampling in both term and preterm newborn infants. the project applied the plan-do-study-act (pdsa)5 cycle to bring about the desired improvement in the use of nonpharmacological interventions. several plans for the project were modified after consultation with the fine supervisors. pdsa1 (april 2019): baseline data was collected using evin scores for 20 heel prick or lancing episodes performed by nurses or doctors. over two weeks the project lead and core team trained staff to use the evin with observation and scoring at the bedside or during simulations. pdsa 2 (july 2019): four weeks post training evin scores were again collected by core members working in pairs. following this a second pdsa cycle was initiated with more training, engagement of parents, feedback, and campaigning. pdsa 3: (december 2019): further data was collected, evaluated, and disseminated. the hospital quality improvement team advised that the project be expanded to involve the whole of the neonatal unit (46 beds: 16 newborn intensive care unit, 8 high dependency unit, 22 special care baby unit). training sessions have now captured most of the nurses in unit. the evin will be incorporated into the unit pain management guideline entrusted to the project lead. results an evin score of >85% indicates best practice and < 70% indicates poor practice. average evin scores improved from 65% (poor) at baseline, to 71% (intermediate) at the midpoint and 87% (best practice) at the pdsa3 evaluation. the percentage of improvement in best practice scores increased from 0% at baseline to 59% at pdsa.3 areas that showed the most improvement were rest before procedures, pacing of the procedure and facilitation of self-regulation. areas identified for further improvement were provision of a sweet oral solution for painful procedures, support from a second person and facilitation of sucking. conclusion a pilot quality improvement innovation project performed in the framework of fine 3 training, improved standards of nonpharmacological pain management and was adopted as a model for achieving wider changes across all levels of care in a busy level iii neonatal unit. the evin proved to be a practical tool for training and evaluation of practice. relevance to nidcap fine 3 is part of an educational pathway that is endorsed by the nfi as foundations in nidcap education. the experience offered in fine 3 shows promise as a way to nurture change management skills that could be applied either before, or even after, nidcap training. references: 1. warren i, mat-ali e, green m, nyathi d. evaluation of the family and infant neurodevelopmental education (fine) programme in the uk. journal of neonatal nursing 2019,25(2):93-98. doi:10.1016/j.jnn.2018.11.004 2. brummelte s, grunau re, et al. procedural pain and brain development in premature newborns. annals of neurology 2012,71(3):385-96. doi: 10.1002/ana.22267 3. pillai riddell r, racine n, et al. non-pharmacological management of infant and young child procedural pain. the cochrane database of systematic reviews 2011, issue 10. art. no.: cd006275. doi: 10.1002/14651858.cd006275.pub2 4. warren i, hicks b, kleberg a, eliahoo j, anand kjs, hickson m. the validity and reliability of the evaluation of intervention scale: preliminary report. acta paediatrica 2016,105(6):618-22. doi: 10.1111/apa.13370 5. donnelly p, kirk p. use the pdsa model for effective change management. education for primary care 2015,26(4): 279-81. doi: 10.1080/14739879.2015.11494356 a quality improvement project for non-pharmacological pain and stress management akyempon an1, hicks b2, warren i3 1 department of neonatology, homerton university hospital, london 2 isle of wight nhs trust 3 department of neonatology, university college london hospital, london doi: 10.14434/do.v14i1.31813 12 • 2021 • developmental observer serbia, officially the republic of serbia, is a landlocked country situated at the crossroads of central and southeast europe in the southern pannonian plain and the central balkans. serbia has a population of seven million people, with 65,000 newborn deliveries per year. the incidence of preterm births is about 7%. belgrade, the capital city with two million inhabitants, has five maternity hospitals. the institute of neonatology in belgrade, is the largest neonatal unit in serbia. the neonatal hospital has 160 beds, 313 employees, 42 medical doctors (30 neonatologists), and 209 neonatal nurses. there are five neonatal wards, one being the newborn intensive care unit (nicu) classified as a level iiib with 22 beds. the institute has approximately 900-950 admissions per year, (preterm and high-risk newborns), from 52 delivery facilities located all over the country. more than 60% of the babies require intensive care. in an attempt to improve the outcome of newborns, as well as increasing our professional expertise, our institute team chose to learn more about developmental care. in 2007, we started communication with the uk nidcap training centre in london. in 2008, inga warren, a nidcap trainer, visited our institute, conducted a study day, and consulted with our team members. as a result of our meetings, we set short-, medium and long-term goals. by 2010, the majority of the tasks were completed, predominantly the shortand medium-term goals. we worked to turn the hospital into a more home-like environment for the babies. we introduced colorful bedding, improved positioning, started to encourage talking to the babies, and started using more shades and incubator covers. in addition, we started paying more attention to the environmental noise, we bought some snoedel dolls, and made some shelves for the equipment. two separate rooms for kangaroo mother care were opened. the rooms for kangaroo mother care (kmc) were created as a place for skin-to-skin holding as well as a place where families could have privacy in a homey atmosphere. parents’ reactions to this were fantastic. their satisfaction was visible – they described that they felt they were being treated as a family with understanding, attention, and respect, and they responded to the health care professionals in the same way. the parents started offering donations and asking how they can help the hospital. very soon, the two rooms were not enough because they were occupied all the time! actually, kmc was a turning point for the nursery. they contributed very much to parents’ encouragement and satisfaction. this had an impact on the parent – doctor relationship and contributed a lot to appreciation of the program among colleagues. we set up a nidcap team with six members, including: a neonatologist, a psychologist, a physiotherapist, nicu nurses and a respiratory therapist. in december 2010, two nurses became nidcap trainees under the uk nidcap training centre. the institute of neonatology started the partnership with parents for better outcome project, which includes nidcap, kmc and introduced an open-door policy with daily 12 hour access for parents and families. all of these initiatives were approved by the institute’s advisory and management board. nidcap team members gave lectures, held presentations on nidcap and kmc in seminars and meetings for neonatologists and neonatal nurses. several articles were published in the magazine for young parents a parent and a child. team members were invited to speak about this new newborn care method on several television shows on different channels. one of the shows even sparked the creation of the battle for the babies campaign, which aimed to raise funds for one hundred incubators for the babies in serbia. the result was not one hundred, but rather the donation of more than two hundred incubators. early on the equipment for developmental care was not available in serbia, such as reclining chairs for skin-to-skin contact, incubator covers, sound ears, nests and rolls for positioning, small pacifiers, small diapers and even small clothes for preterm and tiny babies. a lot of effort has been made to make it available, and today it is in use. the opportunity of meeting the european foundation for the care of newborn infants’ (efcni) executive board chairwoman, silke mader, further helped raise awareness for the needs of preterm babies across the country. very soon the serbian preterm infants’ parents association little giant was established. this organization became a member of the efcni and started a close cooperation. celebration of the world prematurity day was initiated, first in belgrade, and now all across serbia. it has been a special privilege for us, and our work was to be included, as a topic expert group members, in the work on standards of care for newborn health, issued by the efcni. the institute of neonatology has two nidcap professionals, and, considering the duration and complexity of nidcap training and education, together with the size of the hospital global perspectives of developmental care serbia milica rankovic janevski, md, phd institute of neonatology, belgrade, serbia doi: 10.14434/do.v14i1.31817 developmental observer • 2021 • 13 and its number of staff and babies, we considered trying a less demanding form of education, named practical skills. six nurses successfully completed the practical skills education, and we organized workshops for all the wards, to spread the basic knowledge and enable easy and successful implementation of developmental care. later practical skills evolved into the family and infant neurodevelopmental education (fine) programme. it seems that we were among the pioneers. our institute has been involved in a number of additional related efforts: in collaboration with the international association for infant massage (iaim), ten nurses completed the education, so that our institute could offer education in baby massage to the parents, prior to or soon after discharge, in an effort to support emerging relationships and close contact between the babies and their parents; two medical doctors were educated for bayley scales of infant and toddler development, (bayley-iii) for further follow up of the hospitalized babies; another equal achievement is that we actively participated in the project of the european milk bank association (emba) on recommendations for the establishment and operation of human milk banks in europe: a consensus statement from emba. breastfeeding and milk banks are closely connected to the developmental care; and unicef in serbia showed interest in our work, and the institute. in cooperation with unicef, workshops in developmental care were organized in all the regional medical centers in serbia. as all our activities, and especially the new method of nidcap care, became increasingly known, the members of the nidcap team were invited to share their knowledge and experience. they have given presentations and organized workshops in several maternity and childrens’ hospitals in belgrade, other cities in serbia, and even in the greater region. there is, of course, still a lot of space for further education on developmental care in serbia. perhaps the fine programme should be considered for the beginning, and nidcap as the next step for those more interested and willing to get involved in greater depth. funding for education in developmental care is still a challenge that has to be resolved and where we constantly seek support. we are very proud of the fact that our institute and our country were the first in the region (serbia also being eighth in europe) to begin nidcap education and implementation. we started the education in nidcap in an attempt to expand our knowledge and improve the care and outcome of the babies at the institute. though honestly, the result was incomparably higher. newborn care in hospitals has been improved all over the country, providing tangible, measurable results. and above all, the awareness of the specific needs and the interest in the wellbeing of preterm babies and their families has been elevated to a much higher level. this gives us all a strong encouragement to continue on the same path with equal effort and passion. the first family and first skin-to-skin contact in the newly opened kmc room. photo taken by father (art photographer) ivan jekic, seen in the mirror. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 developmental observer • 2020 • 21 p u b l i c at i o n s 2 0 1 9 – 2 0 2 0 2019 1. alvarez mj, rodriguez-gonzalez d, roson m, lapena s, gomez-salgado j, fernandez-garcia d. effects of massage therapy and kinesitherapy to develop hospitalized preterm infant's anthropometry: a quasi-experimental study. journal of pediatric nursing. 2019, 46:e86-e91. doi: 10.1016/j.pedn.2019.03.015 the implementation of a massage therapy and kinesitherapy protocol is beneficial for the anthropometric development of hospitalized preterm infants. an easy to administer and costeffective intervention such as massage therapy and kinesitherapy can improve the anthropometric development of preterm infants and reduce growth-related morbidity in the short, medium, and long term. 2. baghlani r, hosseini mb, safaiyan a, alizadeh m, arshadi-bostanabad m. neonatal intensive care unit nurses' perceptions and knowledge of newborn individualized developmental care and assessment program: a multicenter study. iranian journal of nursing and midwifery research. 2019, 24:113-117. doi: 10.4103/ijnmr.ijnmr_54_18 this cross-sectional study was conducted on 149 nurses working in the nicus across iran. three questionnaires were used to collect demographic data and to explore the nurses' perceptions and knowledge of the nidcap program. the results of this study showed that the majority of nurses participating in the study had high knowledge about nidcap. 3. butler s, sadhwani a, stopp c, singer j, wypij d, dunbarmasterson c, ware j, newburger j. neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. congenital heart disease. 2019, 14(2):236-245. doi: 10.1111/chd.12686 the neurodevelopment of a convenience sample of high-risk infants following cardiac surgery but before hospital discharge were evaluated using an adaptation of the newborn behavioral observation. at discharge, postoperative infants with chd had impairments in autonomic, motor, attention, and state regulation following cardiac surgery. findings suggest that neurodevelopmental follow-up and intervention should begin early in infancy. 4. chuang lj, wang sh, ma mc, lin cn, chen c, huang m. a modified developmental care bundle reduces pain and stress in preterm infants undergoing examinations for retinopathy of prematurity: a randomised controlled trial. journal of clinical nursing. 2019, 28(3-4):545-559. pmid: 30091495, doi: 10.1111/jocn.14645 to determine the comparative efficacy of developmental care versus standard care for reducing pain and stress in preterm infants during examinations for retinopathy of prematurity (rop). since the results show the benefits of developmental care in an rop examination, it can be the practical evidence basis by which to develop a standard of procedure or guideline for clinical practice. 5. griffiths n, spence k, loughran-fowlds, westrup b. individualised developmental care for babies and parents in the nicu: evidence-based best practice guideline recommendations. early human development. 2019, 139. doi: 10.1016/j.earlhumdev.2019.104840 the application of a systematic approach to improve practice is considered the most effective strategy for implementing neuroprotective developmentally supportive care. the content of this paper incorporates evidence-based systematic reviews to guide clinicians in the application of developmentally supportive interventions. 6. mirlashari j, valizadeh s, navab e, craig j, ghorbani f. dark and bright-two sides of family-centered care in the nicu: a qualitative study. clinical nursing research. 2019, 28:869-885. doi: 10.1177/1054773818758171 the aim of the study was to explore the lived experiences of nicu nurses on implementing fcc. this study provided deeper understanding about nurses' perceptions of fcc implementation. in muslim developing countries, fcc implementation is challenging and nurses are under extra pressure because of a shortage in nursing workforce; however, having positive experiences with family participation and valuing their beliefs allowed them to support family involvement. 7. painter l, lewis s, hamilton b. improving neurodevelopmental outcomes in nicu patients. advances in neonatal care. 2019, 19(3):236-243. doi: 10.1097/ anc.0000000000000583 the following are a selection of publications from late 2019 to early 2020 relevant to nidcap. doi: 10.14434/do.v13i2.31063 22 • 2020 • developmental observer the purpose of this study was to measure the effectiveness of a developmental positioning intervention on length of stay, weight gain, and tone/flexion compared with neonates without structured positioning. with greater structure and consistent attention to developmental positioning, outcomes are positively affected. further research with larger sample sizes will identify stronger associations and relationships between positioning and outcome measures. 8. park j, kim js. factors influencing developmental care practice among neonatal intensive care unit nurses. journal of pediatric nursing. 2019, 47:e10-e15. doi: 10.1016/j. pedn.2019.03.014 this study found that professional efficacy had the largest influence on developmental care practice, followed by perception of developmental care, and a task-oriented organizational culture. clinical and educational experience regarding developmental care and working environment was not associated with developmental care practice. a practical training program should be provided to nurses to promote confidence in implementing developmental care for preterm infants. 9. shanty l, dowling r. sonnenschein s, hussey-gardner b. evaluation of an early language and literacy program for parents of infants in the nicu. neonatal network. 2019, 38(4):206-216. doi: 10.1891/0730-0832.38.4.206 to evaluate the effect of a nicu parent education program on parents' early language and literacy practices, and on their confidence interpreting and responding to infant signals. the program significantly increased intention to engage in more early language and literacy practices, and increased parent-reported knowledge of how and when to interact with their infants. the majority of interviewed parents reported engaging in these practices one to two weeks later. 10. treyvaud k, spittle a, anderson pj, o'brien k. a multilayered approach is needed in the nicu to support parents after the preterm birth of their infant. early human development. 2019, 139. doi: 10.1016/j. earlhumdev.2019.104838 a multilayered approach to supporting parents of infants born preterm in the nicu is recommended, with evidence specifically for including layers of individual psychological and psychosocial support, peer-to-peer support, and family centered care. consideration of fathers in the nicu, and areas for future research are also discussed. 2020 11. almadhoob a, ohlsson a. sound reduction management in the neonatal intensive care unit for preterm or very low birth weight infants. ebm reviews cochrane database of systematic reviews cochrane database of systematic reviews. 2020. issue 1. art. no.: cd010333. doi: 10.1002/14651858.cd010333.pub3 to date, 34 infants have been enrolled in a randomized controlled trial (rct) testing the effectiveness of reducing sound levels that reach the infants' ears in the nicu. based on the small sample size of this single trial, no recommendations were made for clinical practice. larger, well designed, conducted and reported trials are needed. 12. anderson pj, treyvaud k, spittle aj. early developmental interventions for infants born very preterm – what works? seminars in fetal and neonatal medicine. 2020, online may 15 doi:10.1016/j.siny.2020.101119 although early developmental interventions vary widely in focus, timing, and mode of delivery, evidence generally supports the effectiveness of these programs to improve specific outcomes for children born very preterm and their families. however, little is known about mechanisms for effectiveness, costand long-term effectiveness, which programs might work better for whom, and how to provide early intervention services equitably. this information is critical to facilitate systematic integration of effective developmental interventions into clinical care for infants born very preterm and their families. 13. bembich s, trappan a, galimberti a,taglieri j, scolz s, risso fm, sanson g. the role of weighing-bathing sequence and postmenstrual age in eliciting adaptive/ maladaptive responses in very low birth weight preterm infants. journal for specialists of pediatricnursing. 2020;e12292.doi: 10.1111/jspn.12292 responses were assessed using an observational sheet based on als' synactive theory of development. autonomic and motor responses were scored according to five-point likert scales. effects of weighing/bathing execution sequence and post menstrual age (pma) on autonomic and motor response scores were analyzed by linear multiple regression analysis. the real-time recognition of adaptive/maladaptive responses allows nurses to personalize their approach to preterm infants, taking into account pma and adjusting the appropriate sequence of execution of weighing/bathing nursing procedures. 14. buil a, sankey c, laurence c, apter g, gratier m, devouche e. fostering mother-very preterm infant communication during skin-to-skin contact through a modified positioning. early human development. 2020, 141. doi: 10.1016/j.earlhumdev.2019.104939 the study shows that supported diagonal flexion (sdf) positioning creates more opportunities for mother-infant communication during ssc. sdf positioning fosters a greater multimodal developmental observer • 2020 • 23 temporal proximity, thus supporting a more qualitative motherinfant communication. 15. govindaswamy p, laing sm, waters d, walker k, spence k, badawi n. fathers' needs in a surgical neonatal intensive care unit: assuring the other parent. plos one. 2020, 15(5):e0232190. doi: 10.1371/journal.pone.0232190 reassurance is a priority for fathers of neonates in a surgical nicu, particularly regarding infant pain management and comfort. it is important that health-care professionals provide reliable, honest information and open-access visiting. notably, fathers seek greater recognition of their role in the nicu, beyond being the 'other' parent. 16. griffiths n, james-nunez k, spence k, crowle c, pettigrew j, loughran-fowlds a. the evolution of an interdisciplinary developmental round in a surgical neonatal intensive care unit. advances in neonatal care. 2020, may 06, volume publish ahead of print. doi: 10.1097/ anc.0000000000000741 this article provides retrospective audit data of a developmental round intervention in the surgical neonatal intensive care unit with a focus on data over four years to highlight key areas, including the structure and process, recommended educational standards for team members, and parental engagement, as key markers for developmental round efficacy. future research should focus on the link between the developmental round intervention and long-term neonatal outcomes. 17. jannes c, miedaner f, langhammer k, enke c, göpel w, kribs a, nitzsche a, riedel r, woopen c, kuntz l, roth b. increased parental satisfaction by unrestricted visiting hours and developmentally supportive care in nicus – results of a german multicenter study. the journal of maternalfetal & neonatal medicine. 2020, 33(11): 1874-80. doi: 10.1080/14767058.2018.1532499 very low birthweight infants from 66 nicus in germany were enrolled in this multicenter study. 1493 questionnaires were completed by 1277 parents. the existence of unrestricted visiting hours and standardized procedures for developmentally supportive care were positively associated with parental satisfaction. fostering the parent–infant interaction through the provision of developmentally supportive care and unrestricted visiting hours for parents whose infants are hospitalized within an nicu significantly contributes to the satisfaction of parents. 18. johnson mr, helm jm. neonatal and early infant development. north carolina medical journal. 2020, 81(1):46-47. doi: 10.18043/ncm.81.1.46 as with neonatal development, the field of infant mental health continues to evolve. another current trend is the development of evidence-based models of both prevention and therapeutic intervention for infants and very young children, including direct parent support and interventions to strengthen the parent-child relationship. the field of infant and young child mental health has also embraced the importance of collaboration with other professionals and service systems. 19. miller ta, lisanti aj, witte mk, elhoff jj, mahle wt, uzark kc, alexander n, butler sc. a collaborative learning assessment of developmental care practices for infants in the cardiac intensive care unit. journal of pediatrics. 2020. doi: 10.1016/j.jpeds.2020.01.043 a collaborative learning approach was used to stratify, assess, and compare individualized developmental care practices among multidisciplinary teams at six pediatric heart centers. the collaborative findings were a first step toward strategies to quantify and measure developmental care practices in the cardiac intensive care unit to assess the association of complex inpatient practices with long-term neurodevelopmental outcomes. 20. mirlashari j, brown h, fomani f, khoshnavay de salaberry j, tahereh k, khoshkhou f. the challenges of implementing family-centered care in nicu from the perspectives of physicians and nurses. journal of pediatric nursing. 2020, 50:e91-e98. doi: 10.1016/j. pedn.2019.06.0 the implementation of family-centered care (fcc) in the neonatal intensive care unit in iran is shaped by the health care provider, cultural, legal and operational challenges. organizational, managerial and operational changes are required for fcc implementation. nurses and physicians are well-positioned as leaders and facilitators of family-centered care implementation within the neonatal intensive care unit. 21. morag i, ohlsson a. cycled light in the intensive care unit for preterm and low birth weight infants. ebm reviews cochrane database of systematic reviews cochrane database of systematic reviews. 1, 2020. doi: 10.1002/14651858.cd006982.pub2 one additional study enrolling 38 participants was included in this update, for a total of nine studies reporting on 544 infants. results from one additional study strengthen our findings that cycled lighting (cl) versus continuous bright light shortens length of stay, as does cl versus near darkness (nd). the quality of the evidence on both comparisons for this outcome according to grade was low. future research should focus on comparing cl versus nd. 24 • 2020 • developmental observer 22. pierrat, v, marchand-martin l, durrmeyer x. vasante l, burguet a, cambonie g, kuhn p, datin-dorrière v, durox m, kaminski m, carbajal r, ancel p-y. neurodevelopmental care study group of epipage -2. perceived maternal information on premature infant’s pain during hospitalization: the french epipage-2 national cohort study. pediatric research. 2020, 87:153– 162. doi: 10.1038/s41390-019-0422-8 analyses of questionnaires from the french national cohort study of preterm neonates, epipage-2. perceived maternal information on infants’ pain (pmip) was derived from mothers’ answers to questions about information perceived on both pain assessment and management. mothers reporting pmip as “sufficient” were more frequently present and more likely comforting their child during painful procedures. factors independently associated with “sufficient” pmip were high maternal education, gestational age <29 weeks, daily maternal visits, perception of high team support, and implementation of the newborn individualized developmental care and assessment program. 23. pineda r, wallendorf m, smith, j. a pilot study demonstrating the impact of the supporting and enhancing nicu sensory experiences (sense) program on the mother and infant. early human development. 2020, 144, doi: 10.1016/j.earlhumdev.2020.105000 to explore differences in maternal mental health and infant neurobehavioral outcome among infants who received and did not receive the supporting and enhancing nicu sensory experiences (sense) program. preliminary evidence demonstrates improvements in maternal confidence and infant neurobehavioral performance following sense implementation. 24. soleimani f, azari n, ghiasvand h, shahrokhi a, rahmani n, fatollahierad s. do nicu developmental care improve cognitive and motor outcomes for preterm infants? a systematic review and meta-analysis. bmc pediatrics. 2020, 20, 67. doi: 10.1186/s12887-020-1953-1 current evidence suggests that developmental care in nicu settings could have significant effects on mental and motor development of preterm infants, especially at 12 months of age. however, because of clinical heterogeneity, more studies are needed to evaluate the effects of developmental nicu care in the development of preterm infants. 32nd annual nidcap trainers meeting september 24–26th, 2021 seminaris hotel bad boll 73087 bad boll, germany (30 km from stuttgart) hosted by the nidcap training center in tübingen, germany (by invitation only) photo by sulox32 (pixabay) photo by hbieser (pixabay) 2 • 2021 • developmental observer twenty years ago, the nidcap federation international (nfi) was founded. in the years leading up to 2001, nidcap outreach had grown to 12 nidcap training centers (11 in the us and 1 in europe). it became clear that nidcap efforts would be best served by organizing and forming a community of nidcap trainers and supporters. so, in october 2001, the nfi was incorporated as a membership and educational certifying non-profit organization (501c3). twenty years later, in 2021, our international community has grown to include over 3,000 clinicians, educators, researchers, families and students. the nfi continues to evolve, and to oversee, develop and support the nidcap model, caregiving and training approach. the nfi’s efforts, overseen by the board of directors, are distributed across four major committees: program, governance, advancement and finance, and three advisory councils. graphic depictions of the nfi's committees, councils, subcommittees and their respective activities can be seen here and on the next page. a semi-annual publication of the nidcap federation international ©2021. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria lopez maestro, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l family voices contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer the nfi celebrates 20 years! deborah buehler, phd, sandra kosta, ba doi: 10.14434/do.v14i2.32998 developmentalobserver@nidcap.org developmental observer • 2021 • 3 members are welcome and encouraged to participate in the nfi’s mission to advance the philosophy and science of nidcap care and assure the quality of nidcap education, training, mentoring and certification for professionals and hospital systems. whether you wish to volunteer time to write a blog or be interviewed for a podcast or join a committee or taskforce… there is a place for you to contribute. please direct your questions and interest to info@nidcap.org. we look forward to continuing to realize the nfi’s potential together over the next 20 years! info@nidcap.org i t has been more than 35 years since my fascination with the amazing behavior of the preterm infant began and the seeds for nidcap took shape. as a graduate student at the university of pennsylvania i had the good fortune to visit one of the earliest and largest newborn intensive care units (nicus) at the time, at the philadelphia general hospital. margaret (peggy) williams, md a pioneer neonatologist not only concerned with the survival of these tiny infants but also with their cognitive and emotional wellbeing and that of their inner city mothers, collaborated with my advisor, sandra scarr, phd a psychologist and behavioral geneticist convinced of the remarkable resilience of humans. as optimistic american women in ‘academia’ would, they developed the first preterm stimulation program: tiny colorful musical butterfly mobiles moved gently above the infants within the incubators; sun-umbrellas shielded their faces from bright overhead lights; and skilled social workers supported their mothers’ wellbeing --the last of these turning out to be perhaps the most effective ingredient in the preterms’ caregiving.1-3 i ‘blindly’ collected the outcome data, which meant home visits in mantua, belmont, carroll park, cobbs creek, haddington/dunlap, and parkside, west philadelphia’s housing project neighborhoods, where even taxis refused to go. i met amazing young women, grandmothers, and tough young men, all proud of their tiny babies, who had ‘made it’. aside from the many strengths i witnessed, i ‘diagnosed’ developmental delays, cerebral palsies, rickets, malnutrition, hearing and vision impairments, skin and chronic respiratory infections, and even some pneumonias, and all that with just a bayley kit and the chutzpah of a graduate student! i made referrals, set up meetings, consults, found rides, cooked, cleaned and in general learned a message from the nfi president looking back to the future the official newsletter of the nidcap® federation international spring 2007 vol. 1 no.1 continued on page 2 “never doubt that a small group of committed [individuals] can change the world: indeed, it is the only thing that ever has.” margaret mead, 1901-1978 the nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit professional membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive and special care nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, health care professionals, and nurseries in the nidcap approach. table of contents seventeenth annual nidcap trainers meeting...................................... 3 nidcap profile........................................... 4 family voices.......................................... 6 supporting families............................... 8 nidcap reflections.................................. 9 nfi training developments.................... 10 current developmental research........ 12 developmental resources.................. 13 developmental observer � • spring �007 • developmental observer the nidcap federation international (nfi) contributions we would like to thank the following foundations for their generous support of the nfi and its continuing work: a.l. mailman family foundation bella vista foundation pritzker early childhood foundation tremendous amount. i experienced first hand the effects of the hardship of poverty, lack of housing, starvation, prejudice and ostracism, of mental illness and devastating drug effects, and in the face of it all the spirit to fight and overcome. these events made me more eager to learn about the essence of these immature infants, who catalyzed the will of their parents to succeed for them and who so clearly were determined to get on with their lives against all odds. just a few years later, when maria delivoriapapadopoulos, md invited me into the nicu at the hospital of the university of pennsylvania, where i was studying the first interactions of fullterm newborn infants with their adolescent inner-city mothers, i jumped at the opportunity to be with these remarkable infants first hand. never mind that i was the ‘bagger’ of the infants, trying to help them breath, and the ‘dabber’ of the neonatologists’ brows as they attempted to exchange poorly oxygenated blood with fresh blood in a valiant effort to combat dreaded lung disease.4 my fascination and awe was for the determination of the tiny infants themselves, who curled up, fought against the hands that tried to hold them down and keep them still, and swiped against anything that came towards them. they flailed, arched and gave their all to get back to and continue with what they had been doing all along in the womb, sucking on their hands and fingers, tucking themselves up into little curled up balls, and cradling and hugging themselves into cozy comfortable positions. nilsson published his first incredible fetal fiber-optic photographs of the fetus5, and all i saw was how competent and simultaneously misunderstood these babies were. this is when i resolved to learn about these infants, to understand them in their own right, to do justice to their competence and to warrant their trust and confidence. to be continued. heidelise als, phd notes: 1. williams ml, scarr s. effects of short-term intervention on performance in low-birthweight, disadvantaged children. pediatrics 1971; 47: 289-298. 2. scarr-salapatek s, williams ml. a stimulation program for low birth weight infants. am j public health 1972; 62: 662-667. 3. scarr-salapatek s, williams ml. the effect of early stimulation on low-birthweight infants. child dev 1973; 44: 94-101. 4. delivoria-papadopoulos m, morrow g, oski fa. exchange transfusion in the newborn infant with fresh and “old” blood: the role of storage on 2, 3-diphosphoglycerate, hemoglobin-oxygen affinity, and oxygen release. peds 1971; 79: 898-903. 5. nilsson l. behold man. boston: little, brown and company; 1973. looking back to the future continued from page 1 a semi-annual publication of nidcap federation international. © 2007 nidcap federation international. articles from developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org senior editor rodd hedlund, med associate editors deborah buehler, phd gretchen lawhon, rn, phd printed on recycled paper developmental observer the 17th annual nidcap trainers meeting was hosted by the st. luke’s nidcap training center of boise, idaho and was held october 28 – 31, 2006 at the sun valley resort in idaho. this year there were over sixty participants representing at least seven different professional disciplines from twelve countries. our overall theme of “windows on the developing brain” began with individual introductions in which each participant shared a unique window onto themselves. the highlight of this year’s meeting was the scientific presentation “windows on the developing brain: behavior, eeg and mri” presented by dr. frank h. duffy of children’s hospital, boston, ma. dr. duffy reviewed the contribution of several research studies explaining how nidcap intervention alters brain anatomy and function. he demonstrated the manner in which preterm infants differ in white matter and brain volume as well as its effect on cortical – cortical connectivity. as we grasped the concept of spectral coherence, he helped us to understand, through discriminant analysis, the correlations between medical risk factors and neurobehavioral functioning. through dr. duffy’s presentation we were reminded that nidcap is an adaptive rather than prescriptive approach that works in many specific infant situations, but an approach which, when analyzed with a combination of groups, may enlarge variance and obscure significant findings. dr. duffy concluded: “given that caveat, it is clear that the nidcap approach works and can be proven by mri and eeg data to those who foolishly take issues with behavioral research.” there were nine research/abstract presentations this year representing work from eight different countries concentrating on developmental care with infants and families. four presentations focused upon the parentinfant relationship; three presentations discussed aspects of developmental support and stress or pain responses in the premature infant; one presentation focused on the sleep-wake cycle of the premature infant; and another presentation reviewed the developmental care practices in european units. given that both apib and nidcap training are moving into their third decade, we devoted a work session to each, and a work session was also devoted to nidcap center development. one of the unique aspects of the trainers meeting is our devotion to the reflective process. this process was utilized to assist us to share the emotional aspects of the nidcap work. in addition, we took time to continue our small group work to support our efforts to complete a nidcap nursery certification program. there was little time left for sleep with our late night sessions. saturday evening was dedicated to the celebration of our recently departed friend and colleague cathy daguio, med, mph, otr/l, university of connecticut nidcap center. sunday evening was filled with relaxation and friendship as we took full advantage of the local “roosevelt” restaurant seventeenth annual nidcap trainers meeting gretchen lawhon, rn, phd the developmental observer • spring �007 • � dr. frank h. duffy of children’s hospital boston presented at this year’s meeting. continued on page 5 � • spring �007 • developmental observer in 1974, during the first phase of her professional nidcap work, kathy entered the nicu through the portal of the newly founded child development center at oakland children’s hospital. as an early childhood educator working with severely disabled children and their families, kathy brought a unique view to the acute care perspective of the nicu. the premature and sick newborns presented a unique challenge and sparked many questions in her mind. kathy spent five years reading, attending case conferences and daily medical rounds and asking numerous questions to acquire a basic understanding of the medical conditions of preterm infants, the needs of parents and staff, and the cultures of the newborn intensive care nursery. kathy recognizes her work with dr. richard umansky, a developmental pediatrician and leader of the child development center, as an incredibly valuable learning experience. during this time she learned clinical assessment skills and guided professionals through interactions with families. kathy and bette flushman, ma shared a position as a developmental specialist in the child development center. they were both challenged to clearly define and articulate the role of the developmental specialist in the nicu. kathy notes that her most altering professional experience came from learning how to administer the assessment of preterm infant behavior (apib). this provided her with a deeper understanding of each individual infant. the apib also assisted her to peer into the inner functioning of the premature infant and recognize the infant’s competence while simultaneously becoming aware of the infant’s sensitivities. both peter gorski, md and heidelise als, phd provided encouragement and opportunities to expand and validate the role of the developmental specialist within the intensive care nursery. in 1990, the nicu team at oakland children’s hospital was offered an opportunity to be a site for the national collaborative research institute (ncri), a u. s. department of education funded intervention study to demonstrate the efficacy of the nidcap approach. kathy began articulating her observations and insights and describing what she had learned from dr. als to the nicu staff. this supported and confirmed the value of the developmental specialist’s role within the nursery. during the course of the ncri study, kathy saw first hand what the premature infant was capable of. the infant’s competence was supported and enhanced: 1) when care was provided by a caregiver kathleen a. vandenberg, phd dorothy vittner, rn, msnc this column has been designed to highlight individuals who have been involved with nidcap and to share their experiences. dr. kathleen vandenberg, phd has been involved in facilitating the emerging competence of infants, families, and professionals in newborn intensive care for over three decades. she is a fourth generation san franciscan native who greatly appreciates family. her own family is a source of renewal that enables her to provide the emotionally intensive support to families in the nicu. n i d c a p p r o f i l e developmental observer • spring �007 • � that recognized the infant as an active structurer of his/her own developmental trajectory; and 2) when the caregiver supported the ongoing co-regulatory process of the parent-infant relationship. this work was making an impressive difference in the outcomes of infants cared for in the intensive care nursery. kathy describes this early foundation of her professional journey as the period in which she learned to teach. kathy’s five year experience with the ncri concluded a twenty year commitment to the infants and families at oakland children’s hospital. in 1996 kathy, with the support of dr. barry fleisher, her supervisor and mentor, moved the west coast nidcap center to the lucile packard children’s hospital at stanford university. during this time she provided training to the staff to assist them to better understand the nidcap model while simultaneously continuing to work directly with infants and their families. kathy developed supportive relationships with the multidisciplinary staff which opened many pathways for the nidcap program to successfully emerge. her training focus also broadened as she began to provide nidcap training to nicus in europe, canada, the pacific rim, and across the united states. in 2004, kathy officially entered the current phase of her professional journey in which she delights in the joy of sharing her own learning. as a master nidcap trainer, she guides and supports other professionals within the context of their complex nicu systems, to become nidcap trainers. kathy is a lifelong student and learner. she recently earned a doctoral degree in human development and organization from fielding graduate institute. interwoven throughout kathy’s incredible journey has been her sense of wonder and respect for the courage and strength shown by the infants and families within the environment of the nicu. kathy feels honored and privileged to continue her work as a nidcap master trainer as she trains professionals and supports infants and their families along their individual developmental trajectories. seventeenth annual nidcap trainers meeting continued from page 3 in downtown ketchum, which included much dancing and laughter by all. on our last evening together, we partook in a local custom by bundling up for a hay ride to the trail creek restaurant for yet another memorable evening. each of us leaves the annual trainers meeting having been reenergized and renewed through our relationship-based dedication to one another and our nidcap work. next year’s nidcap trainers meeting, september 29 – october 2, 2007, will be hosted by the french nidcap center. it promises us another unique setting in which we are able to come together and immerse ourselves in the nidcap work while sharing our successes, as well as working together to face our challenges. the overall theme of this meeting will be “understanding pain, stress and comfort in the developing newborn.” the sun valley resort in idaho. a special note: invited participants to next year’s nidcap trainers meeting should begin to consider topics for the research abstract presentations. � • spring �007 • developmental observer while i sat at my son’s bedside in the nicu, the follow-up clinic director came in the room to sit with me and told me to think about coming back someday to help other nicu parents. andrew was our second child and our second nicu experience; caroline was born 10 weeks early two years prior, and andrew was 7 weeks early. my husband, eric, and i spent about 10 weeks total in toledo children’s hospital nicu. five years later, i decided it was time to get back to the nicu and do whatever i could to help families. initially, i became a volunteer and went into the unit, usually in the evening and talked with families. with no job description and little staff support, i didn’t feel very useful but did what i could. a year later, i was invited to join the family advisory council. the council helped me to work ‘behind the scenes’ by collaborating with staff, enabling me to gain credibility, and therefore, the ability to create programs to support families. i am now the family advisory council chairperson and have been for the past four years. i am also a member of the nicu family centered care committee. through a grant, we created parent resource binders, providing organized, essential information to every parent. and as important, sections of the binder give families the opportunity to ‘journal’ and keep records of their babies’ milestones and progress. i remember receiving a baby book as a shower gift and realizing how little relevance it had for me as a nicu parent. for the past six years, i have been co-facilitating a weekly nicu parent group along with a unit social worker. we present a topic of interest to families each week, such as “supporting your baby’s development”, “protecting your baby in the nicu and at home” (infection control issues), and “taking your baby home”. the topics are presented by nicu professionals. if the speaker isn’t a nurse, we also include one of the bedside nurses in the group. the focus is education which is the reason the parents attend. parents want to know everything they can do for their babies. since the meetings are at lunch time, we provide soup, which is a bonus for parents, because they can have lunch without leaving the unit. more importantly, they get the chance to openly talk about their experiences with other parents. the educational piece is always very helpful but many times, the parents want to discuss other issues, which we encourage. the forum is theirs. most of the time, i don’t say very much. i listen. but sometimes, i am the expert in the room. every experience is different, every family is unique, but the commonality of situations and fears almost always arise. parents will talk about their fears: for example the apnea monitor. there is fear of taking one home or the fear of not having one at home. for many there is the fear of taking care of their baby alone at home. i encourage them to do as much care as possible while in the hospital, and their confidence level will elevate and many fears will dissipate by simply being a parent of a newborn. the work that i do is satisfying and frustrating at the same time. the more i do, the more there is to do. and there is so much to do. i would like to do more for nicu fathers to ensure their inclusion. i’d like to provide an evening parent group as we do during the daytime. i see many nicu mothers with delayed postpartum feelings and would like to have some type fa m i ly v o i c e s kathy keller kathy and her husband, eric, share their parenting journey. developmental observer • spring �007 • 7 from the editors dear readers, it is our pleasure to present this first issue of the developmental observer, the official newsletter of the nidcap federation international (nfi). we hope that it provides information about our organization and furthers understanding of our nidcap work. some of our columns will be constant from issue to issue, while others will feature different aspects of the nfi’s efforts. we invite you to write us with your comments regarding the content of any of the columns presented in this newsletter. we are also interested in any suggestions that you have with regard to future topics that you would like to see addressed in the developmental observer. please contact us at: developmentalobserver@nidcap.org developmentally yours, rodd hedlund, med, senior editor deborah buehler, phd, associate editor gretchen lawhon, rn, phd, associate editor of an educational program about this issue. right now, we are looking to create a weekly scrapbooking workshop for families. but overall, my goal is to create a complete environment of family centered care. in 2002, i was inducted into the toledo children’s hospital distinguished fellows’ society for my volunteer work with families. to say the least, it was a huge surprise since i don’t write checks and there are no initials after my name. to be acknowledged was a tremendous honor. the aftermath of the nicu experience is life-altering, from simple tasks like washing one’s hands, to the huge issues like a child’s developmental milestones. we see through different eyes. many times, i tell parents that they have gained an education that others do not have. even though they didn’t register or sign-up for this experience, they will carry it with them forever. handswaddling containment provided by the infant’s mother during an attending neonatologist’s iv insertion procedure. developmental care in the moment � • spring �007 • developmental observer gabrielle had been born weighing 550 grams and had needed the assistance of the oscillating ventilator for over a month, but was now much more stable medically. the neonatologist had just spent an hour carefully reviewing her medical history and current plan with her young parents, and asked again what questions they had at this point. her parents looked thoughtful and glanced at the three-page medical summary in their hands, before her mother said “we just want to know more things we can do to feel like her parents.” this vignette, in a setting where developmental care and family support is highly valued, pinpoints one of the key goals of developmentally supportive, family centered care, and how important it is to constantly evaluate how we are doing in helping parents ‘feel like parents’. no matter how successful we are at providing excellent newborn care and mindful developmental support, the challenge of supporting each parent to feel capable, connected and increasingly autonomous as parents remains crucial. nidcap-based practice offers many tools, as well as a strong theoretical underpinning for success in meeting this challenge. in the nursery and in newborn intensive care follow-up, both clinical observation and research support the absolutely central role of family support in ensuring an optimal outcome for each infant. as the developmental care guidelines for use in the nicu* state: “the parent looks to and depends on the professional caregivers to be the parent’s and the infant’s best advocate and champion. the unconditional emotional allegiance to the parent in support of their infant’s best care fosters the parent’s confidence, competence and trust, which are key to developmental care.” this column will focus on successful approaches to family support, share current research and emerging clinical practices with articles by guest columnists, and provide a forum for exploring and encouraging efforts by nidcap professionals in this central domain of our work in the nicu. from time to time, it will also reflect on the strong foundation of this work in fields such as psychology, anthropology, parent and infant development, family systems, and care systems as they support our efforts. readers are invited to share ideas, questions, cases, and suggestions for topics with the editors as we support each other to support families to take their infants home with confidence and joy. reference * als h, mcanulty g. developmental care guidelines for use in the newborn intensive care unit (nicu). nidcap federation international document, 2006, p. 2. s u p p o r t i n g fa m i l i e s melissa r. johnson, phd developmental observer • spring �007 • � this is how tammy casper, rn and linda lacina, rn from cincinnati children’s hospital began their reflection on their nidcap work. this column will be a regular feature in this newsletter. it will draw upon the varied and vast experiences of nidcap professionals, inviting individuals from all over the world, and all levels of experience, to share memorable moments of nidcap work. while the experiences recounted will be personal moments of success and perhaps of struggle, my hope is that these thoughtful reflections will resonate with you and support you in your own journey to care for infants and families in a family centered, developmentally supportive manner. linda and tammy continue: nidcap has taught us concepts conveyed in the following example. carson was born at 25 weeks gestation, and was acutely ill. carson’s father took a quiet back seat until he was present for a nidcap observation. his bedside nurse, also a nidcap professional, was beginning to feed carson his bottle. she took the lead by identifying and explaining each gesture and expression revealed by carson. carson’s father responded to his son with gentle patience and soft touches. as carson responded to his father’s touch, his nurse again explained his son’s behavior. the guidance provided by carson’s nurse opened up his father’s eyes and heart to his baby. as observers, we witnessed carson’s nurse helping his dad to ‘understand it all.’ we felt that carson had what he had longed for —someone to see his strengths, partner with his vulnerabilities, and accept him as a whole person. above everything else, nidcap helps us see infants in a new way, a way that honors where they are at any particular point in time. a relative newcomer to nidcap, minhui zhao, rn, bs nurse manager of the children’s hospital of fudan university in china also writes: our nicu is one of the best and biggest units in shanghai, perhaps in all of china. in july 2006, we spent a meaningful two weeks participating in the introductory nidcap training at the mid-atlantic nidcap center and learned so much. although we cannot change our current nicu very much now because we will move to a new hospital in the near future, we will put into the design of the new nicu many concepts we have learned about (e.g., larger spaces for parents, and the big room will be divided into several smaller individualized family rooms). the most remarkable change in our nicu is that our nurses pay more attention to infants’ cues. we find babies give us so much information that we have ignored before. we think much more about how to provide individualized care to reduce negative stimulation and provide positive experiences. we welcome parents to be with their babies which we found does indeed help infants grow. in the meantime we have encountered many difficulties running the nidcap program. the most important thing is how to use the ideas of nidcap to care for individual infants in different situations. we believe we have had a good start and we are moving ahead in the right direction. tammy and linda concluded their reflection: nidcap has taught us that (like einstein) we do not have to ‘understand it all’; we just have to pull the pieces together to better understand the developing human infant in the nicu. by sharing with each other, we will better understand developing humans at all levels: infants, families and professionals. einstein said he could never understand it all. nine years ago, we embarked on a remarkable journey to understand infant behavior. as nidcap trainers-in-training, we have been mentored by supportive and passionate leaders in this growing field, in an effort to ‘understand it all’. n i d c a p r e f l e c t i o n s jean powlesland, rn, ms 10 • spring �007 • developmental observer as inga warren reports: st mary’s hospital, famous for alexander fleming’s discovery of penicillin, is the base for the uk’s nidcap training center. a young psychologist, heidelise als, phd once worked in our maternity unit, which was also one of the first maternity units to use the neonatal behavioral assessment scale* for research. so it is hardly surprising that st. mary’s adopted the newborn individualized developmental care and assessment program (nidcap) developed by dr. als (1984). while attending a conference in london, a chance meeting with kathy vandenberg, med felt like a moment of opportunity meeting a lifetime of preparation. when kathy came for a brief visit to the winnicott baby unit, a level iii newborn intensive care unit at st mary’s hospital, little did she know she was laying the foundations for a nidcap training center. after nidcap reliability (1994), dreams of a nidcap training center were made real by the winnicott foundation, a charity funded by parents that has consistently supported nidcap. with the guidance of my treasured friend and colleague, agneta kleberg, rn, phd, nidcap master trainer, i was certified as a nidcap trainer in march of 2006. in 2003 and 2005, with the help of the european science foundation (esf), conferences and workshops in london were organized to bring people together from around the world to discuss developmental care. this boosted serious interest in nidcap, and as a result, thirty professionals (doctors, nurses, and therapists) from seven hospital nicus were accepted for nidcap training by our nidcap training center. we try to satisfy the hunger for information with study days and workshops at our own or other centers in the united kingdom and ireland. our plans for the future include more research, focusing on the sensitivity of care during medical/nursing procedures, and working toward nidcap nursery certification. there are many people to thank, including: parents who understood the value of nidcap and raised money for our center through the winnicott foundation; colleagues who opened the door to change; astute, creative managers who moved mountains; the inspiring nidcap trainers group; the esf project team that gave weight to the cause; and the trainers and master trainers who have spurred us on and nurtured us all the way. as jean powlesland reflects: the journey to becoming a nidcap training center began in 1998 when the harris foundation, a philanthropic organization founded by the late irving b. harris, invited chicago area hospitals to sponsor a nidcap training center. the chosen hospital would dedicate staff to nidcap training, and support the time of those identified to become nidcap trainers. in exchange, the harris foundation would provide funding for the founder of nidcap, dr. heidelise als, to mentor these future trainers and guide the creation of the chicago center. n f i t r a i n i n g d e v e l o p m e n t s rodd hedlund, med it is with great pleasure and pride that the nfi has welcomed the addition of two new nidcap training centers: the uk nidcap training center at st. mary’s, london, england, and the nidcap training center at the university of illinois at chicago medical center. inga warren, dip cot, msc, nidcap director/trainer at st. mary’s hospital and jean powlesland, rn, ms, nidcap trainer at the university of illinois at chicago medical center, share their stories of the development, certification, and current and future plans for their respective training centers below. developmental observer • spring �007 • 11 nidcap training began with seven members of our staff in 1999. the two prospective nidcap trainers, jennifer hofherr, otr/l and i completed our nidcap and assessment of preterm infants’ behavior (apib) certification and began training four staff in the unit in 2004. three nurses and one physical therapist now have dedicated time for nidcap work along with their regular nursing and therapy duties. university of illinois medical center chicago (uimcc) was inaugurated as a nidcap training center on june 15, 2006, becoming the 16th nidcap training center. this recognition was celebrated with a half day conference entitled “nidcap: the earliest intervention.” the key note speaker was dr. als, with the two new trainers also presenting. afterwards, a gala dinner was held at the university, attended by 80 staff, university faculty, and friends. as nidcap trainers we provide training and education for the uimcc nidcap training center, while also working as developmental specialists on the unit. our role is to provide developmental assessments to high risk infants, as well as to educate staff and support parents in their relationship with their hospitalized infant. the nidcap center director, beena peters, rn, ms was the head nurse of the nicu when the harris foundation grant was accepted, and is now an associate director of nursing, overseeing all the maternal child-parent care units as well as nursing finance and informatics. she has been an enthusiastic and strong advocate at the administrative level for this care that is so supportive of infants and families. the medical director of the nidcap center, dr. dharmapuri vidyasagar, is an internationally renowned and respected contributor in the field of neonatology, and until recently had been the director of the neonatology division at uimcc. while our nidcap center staff is focused now on the inpatient developmental program, in the future we will explore the research opportunities that the synactive theory offers in using infant behavior to guide care decisions in the nicu, such as nipple feeding or the weaning of specific medical supports. reference * brazelton tb. neonatal behavioral assessment scale. london: spastics international medical publications, 1984. the newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is a developmental, family centered, and evidence-based care approach. nidcap focuses on adapting the newborn intensive care nursery, including all care and treatment and the physical environment, to the unique neurodevelopmental strengths and goals of each high risk newborn and his or her family, the infant’s most important nurturers and supporters. for a complete description of training centers and the training process please visit our website: www.nidcap.org. the assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) is a comprehensive and systematic neurobehavioral assessment of preterm and fullterm newborns developed by heidelise als, phd and her colleagues (published in 1982, see www.nidcap.org for details). the apib requires in-depth training and provides a highly valuable resource in support of developmental care provision by professionals and families. 1� • spring �007 • developmental observer in the research column, we will look at current topics that are relevant to nidcap. in each edition we will focus on a different theme. our initial topic, newborn pain, was widely reported and debated in 2006. the debate about whether preterm infants are aware of pain when they react to a painful stimulus moved forward with two groundbreaking studies that demonstrated cortical activity in response to painful procedures.1, 2 uncertainty continues to be expressed about pain scales based on behavioral and physiological signs. according to nature 3, fitzgerald’s team in london is now studying the relationship between cortical activity and more subjective pain assessment. acute/procedural pain dominated the debate and nonpharmacological strategies were widely recommended. nidcap has a part to play in assessing pain and actively contributes to management. holsti and colleagues4 used nidcap observations alongside the neonatal facial coding system to evaluate stress and pain in an investigation of the impact of prior pain on clustered care. this study showed heightened biobehavioral reactivity in preterm infants during tactile procedures following a painful intervention and also concluded that clustering care is particularly stressful for infants born at earlier gestational ages. several presentations at the 2006 nidcap trainers meeting in idaho addressed pain/stress. kleberg5 reported on the impact of strategic elements of nidcap on response to rop screening, generally regarded as a painful experience. compared with infants receiving conventional care, nidcap intervention infants had significantly lower physiological and biological markers of stress after the exam. over time the “conventional care” increasingly mimicked the nidcap intervention style, a spill over effect that is a probable confounder in nidcap studies; nevertheless the intervention effect was measurable. in france, the nidcap group6 extended their work on the responses of premature infants to nursing care that generates pain response behaviors, such as nappy change. the latest study involved three newborn intensive care units with different developmental care experience. when developmental care strategies were implemented babies fared better than controls. research on ongoing pain/stress is sparse. leslie and marlow7 stated that: “appropriate support and facilitation of the infant in this situation (e.g. ventilation) has perhaps a much greater potential to improve important outcomes for the child than simple interventions during procedures.” the nidcap team in london8 reported on a quality improvement initiative with ventilated infants that involved a formal pain management tool (n-pass, neonatal pain agitation and sedation scale) to supplement the observations of nidcap-educated staff. according to the scores, a structured problem solving pathway was used to identify and rectify possible sources of stress/discomfort/pain. an audit showed a significant reduction in the use of morphine and inotropes after this approach was introduced. all authors writing about newborn pain/stress are calling for more research and we are bound to hear more about this key area of newborn practice over the coming years. references: 1. slater r, cantarella a, gallella s, worley a, boyd s, meek j, fitzgerald m. cortical pain response in human infants. journal of neuroscience 2006; 26(14): 362-366. 2. bartocci m, bergqvist ll, lagercrantz h, anand kj. pain activates cortical areas in the preterm newborn brain. pain 2006; 122(1-2): 109-117. 3. qiu j. infant pain. does it hurt? nature 2006; 444: 143-145. 4. holsti l, grunau re, whifield mf, oberlander tf, lindh v. behavioral responses to pain are heightened after clustered care in preterm infants born between 30 and 32 weeks of age. clinical journal of pain 2006; 22(9): 757-764. 5. kleberg a, warren i, norman e, mörelius e, berg a-c, ali e, holm k, fielder a, nelson n, hellström-westas l. lower stress response after developmental care intervention during eye examination for retinopathy of prematurity, a randomized study. paediatrics, in preparation. 6. dubourg m, pierrat v, browne j, laudenslager m, ansquer h, oger e, sizun j. impact of developmental care on behavioural, physiologic, and biological pain response in preterm neonates; a multisite trial. nidcap trainers meeting 2006; sun valley, idaho. (presented by sizun j). 7. leslie a, marlow n. non-pharmacological pain relief. seminars in fetal and neonatal medicine 2006; 11: 246-250. 8. warren i, godambe s, banerjee j, chow p. managing infant pain while rationalising the use of morphine – an observational study with retrospective data. nidcap trainers meeting 2006; sun valley, idaho. c u r r e n t d e v e l o p m e n ta l r e s e a r c h inga warren, dip cot, msc developmental observer • spring �007 • 1� dvd series vida health communications, inc. has released a new dvd series entitled “focus on the brain,” a staff training program presenting a practical overview of recent science and research illuminating the process of fetal and neonatal development. using state-of-the-art animations and commentary from leading experts in the field, the dvd conveys what is now known about the impact of early birth on the brain. the program also presents clear evidence about interventions to support optimal brain growth and development in preterm infants. “focus on the brain” gives professionals who work in special care nurseries practical strategies proven to support optimal brain development in preterm infants. the third dvd “no matter how small,” is a parents’ guide to preterm infant behavior and development. based on current research and featuring real parents and caregivers, this program shows parents ways in which they can help support the normal growth and development of their baby’s brain. “focus on the brain” received the c. everett koop surgeon general’s award for best professional education program in november at the international health and medical media festival, where “no matter how small” was a finalist. vida would like to recognize dr. als’ longstanding, unflagging commitment to children and families. so, before official distribution of the programs begins, in honor of dr. als, vida offers introductory special pricing to nfi members. if purchased before april 15, 2007, vida’s entire media “toolkit” for supporting preterm development will cost nfi members $545.00. this represents a savings of over $150.00. for more information about the programs, please visit www.vidahealth.com (or call elizabeth hamlin at 800-550-7047). conferences fragile infant feeding conference: june 19-23, 2007. a five day intensive study of feeding and nutrition for high risk infants in the relaxing setting of the rocky mountains. clinical and research offerings have been designed to expand the expertise of professionals who work with infants and families with feeding challenges. for more information contact adrienn a. hollonds at 303-861-6298 or by email at: alberthollonds.adrienn@ tchden.org. several upcoming contemporary forums conferences: » the young child with special needs, march 26-30, 2007, chicago, illinois; » the national conference of neonatal nursing, april 24-28, new orleans, louisiana; and » neonatal pharmacology, may 16-19, 2007, la jolla, california. for further information go to: www.contemporary forums.com. this section provides our readers with current information regarding developmental resources related to nidcap and developmental care. we invite you to send in information that you encounter, such as upcoming conferences, websites, books, journals. articles, videos, etc., which can be shared with our readers. the following are resources which are currently available for information and education. kathleen a. vandenberg, phd d e v e l o p m e n ta l r e s o u r c e s 1� • spring �007 • developmental observer recent publications 1. als h and butler s. neurobehavioral development of the preterm infant. martin r, fanaroff a, walsh m, editors. in: fanaroff and martin’s neonatal-perinatal medicine: diseases of the fetus and infant 2005; 8th ed. st. louis: mosby: 1051-1068. 2. browne jv and talmi a. family-based intervention to enhance infant-parent relationships in the neonatal intensive care unit. journal of pediatric psychology 2005; 30(8): 1-11. 3. ferber sg. with sorrow you will have sons: the constructive consequence of maternity blues. psychoanalytic review 2006; 93(1): 117-130. 4. lowman l, stone ll, cole jg. using developmental assessments in the nicu to empower families. journal of neonatal network 2006; 25(3): 177-185. 5. mewes auj, huppi ps, als h, rybicki fj, inder te, mcanulty gb, mulkern rv, robertson rl, rivkin mj, warfield sk. regional brain development in serial magnetic resonance imaging of low-risk preterm infants. pediatrics 2006; 118: 23-33. 6. wielenga jm, smit bj, unk lk. how satisfied are parents supported by nurses with the nidcap model of care for their preterm infant? journal of nursing care quality 2006; 21(1): 41-48. 7. wielenga jm. implementatie van “newborn individualized developmental care and assessment program” (nidcap) in de zorg voor zeer vroeggeboren kinderen. verpleegkunde 2006; 21(1): 62-69. please send items for inclusion in developmental resources to kathleen vandenberg, phd, email: kvandenb@mills.edu. nidcap federation international board officers, members and staff president heidelise als, phd nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens. harvard.edu vice president gretchen lawhon, rn, phd nidcap master trainer director, mid-atlantic nidcap center email: lawhon-gretchen@ cooperhealth.edu secretary deborah buehler, phd nidcap master trainer apib trainer west coast nidcap & apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu assistant secretary sandra kosta, ba national nidcap training center email: sandra.kosta@childrens. harvard.edu james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jimhelm@med.unc.edu roger sheldon, md co-director, sooner nidcap training center email: roger-sheldon@ouhsc.edu karen smith, rnc, med nidcap senior trainer st. luke’s regional medical center email: smithka@slrmc.org kathleen vandenberg, phd nidcap master trainer director, west coast nidcap & apib training center email: kavandenberg@yahoo.com björn westrup md, phd director, scandinavian nidcap center email: bjorn.westrup@ karolinksa.se martha hopewell, msc nfi executive director email: nfidirector@nidcap.org developmental observer • spring �007 • 1� national nidcap training center children’s hospital boston, boston, massachusetts usa contact: sandra m. kosta, ba email: sandra.kosta@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center, oklahoma city, oklahoma usa co-director and contact: laurie mouradian, scd, otr/l email: laurie-mouradian@ouhsc.edu carolina nidcap training center wakemed, division of neonatology, raleigh, north carolina usa director and contact: james m. helm, phd email: jimhelm@med.unc.edu or jhelm@wakemed.org colorado nidcap center the children’s hospital, denver, colorado usa director and contact: joy v. browne, phd, rn email: browne.joy@tchden.org west coast nidcap training center mills college, department of education, oakland, california usa director and contact: kathleen vandenberg, phd email: kvandenb@mills.edu st. luke’s nidcap training center st. luke’s regional medical center, boise, idaho usa contact: karen m. smith, rnc, bsn, med email: smithka@slrmc.org mid-atlantic nidcap center the children’s regional hospital at cooper university hospital, camden, new jersey usa director and contact: gretchen lawhon, rn, phd email: lawhon-gretchen@cooperhealth.edu the nidcap training center of milwaukee aurora sinai medical center, milwaukee, wisconsin usa director and contact: laura robison, rn, msn email: laura_robison@charter.net scandinavian nidcap center astrid lindgren children’s & karolinska university hospital, stockholm, sweden contact: ann-sofie gustafsson, rn, bsn email: nidcap@karolinska.se french nidcap center university hospital, brest, france co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr the dutch nidcap training center of leiden leiden university medical center, leiden, the netherlands director and contact: celeste maguire, rn, ms email: nidcap@lumc.nl or c.m.maguire@lumc.nl sophia nidcap training center erasmusmc-sophia, children’s hospital, rotterdam, the netherlands co-director and contact: monique oude reimer, rn email: m.oudereimer-vankilsdonk@erasmusmc.nl centro latinoamericano nidcap otamendi santorio otamendi, buenos aires, argentina director and contact: graciela basso md, phd email: grbasso@fibertel.com.ar uk nidcap training centre at st. mary’s st. mary’s nhs trust, london, england director and contact: inga warren, dip cot, msc email: inga.warren@st-marys.nhs.uk university of illinois medical center at chicago (uimcc) nidcap training center university of illinois medical center at chicago, chicago, illinois usa contact: jean powlesland, rn, ms email: jpowlesl@uic.edu n i d c a p t r a i n i n g c e n t e r s by order of establishment the nidcap federation international (nfi) www.nidcap.org developmental observer, the official newsletter of the nidcap federation international, is produced as a benefit to its professional membership semi-annually in the spring and fall. others who have an interest in the nidcap approach and developmental care are encouraged to subscribe. the annual subscription rate is $15.00 usd. we invite you to subscribe by going to www.nidcap.org and selecting subscribe on the nfi website. you may also subscribe by providing the information below and enclosing a check. name: address: professional affiliation: subscription period: q 1 year ($15) q 2 years ($25) q 3 years ($35) (please check one ) please make your check out to nidcap federation international and send to: nidcap federation international administrative office po box 761112 melrose, ma 02176 usa developmental observer how to subscribe become a member of the nfi the nfi has expanded opportunities for membership to certified nidcap professionals and nidcap trainees. please join us! for more information and the online application form, visit our website at: www.nidcap.org/ become.html developmental observer • 2021 • 3 background the emphasis of newborn intensive care focuses on the physical care of the baby. the benefit of developmental care remains secondary, and the parents are often not integrated in the planning, education, decision-making, clinical implementation, and evaluation of their baby’s care. however, developmental family centered care is evolving as an essential component of practice for newborns and their families who experience intensive care. developmental practice currently lacks evidence based standardization and prioritization in order to affect collaborative practice standardization and ultimate outcomes. consequently, education, communication and policies are inconsistent, and the transition of families to home is wrought with discontinuity. objective a large body of research supportive of family centered developmental care practices and the resulting positive outcomes for infants and families has emerged. examination of existing research and practices resulting in interprofessional standards, competencies and best practices is warranted. study design an interprofessional committee of experts and parents utilized a systematic review process to evaluate the quality and strength of credible evidence. the concept of infant and family centered developmental care was described, practice components were identified, and evidence based standards and competencies were articulated using a process of consensus approval. results the recommended best practices and competencies for infant and family centered developmental care (ifcdc) are the result of the consensus process, and are published (https://nicudesign. nd.edu/nicu-care-standards/). the components of ifcdc include: systems thinking, positioning and touch, sleep and arousal, skin-to-skin contact, reduction of pain and stress for infants and families, and feeding. implications for nidcap the ifcdc document will assist in the provision of evidence for the on-going practices in newborn contexts within the nidcap model. an implementation strategy is required to enable competencies and best practices to be evaluated within each nidcap training center. conclusion the successful utilization of ifcdc evidence based standards can integrate the family with the interprofessional team, standardize practice, improve outcome and complement nidcap implementation. references: 1. browne jv and the consensus committee on infant family centered developmental care. executive summary: standards, competencies and best practices for infant and family centered care in the intensive care unit. journal perinatol, 2020 sep;40(suppl 1):5-10. doi: 10.1038/s41372-020-0767-1. 2. consensus committee on infant family centered developmental care. report of the first consensus conference on standards, competencies and best practices for infant and family centered care in the intensive care unit. february 2020. https://nicudesign.nd.edu/nicu-carestandards/ 3. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. march 4-7, 2020. 4. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. march 6-9, 2019. 5. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. february 28 march 3, 2018. 6. consensus committee on infant family centered developmental care. workshop: recommended standards, competencies and best practices for infant and family centered care in the intensive care unit. gravens conference on the environment of care for high risk newborns, clearwater beach, fl. march 1-4, 2017. recommended standards, competencies and best practices for infant and family centered developmental care in the intensive care unit browne j, jaeger c, spence k, tyebkhan j, and the gravens consensus panel doi: 10.14434/do.v14i1.31809 letter to the editor i can't thank you enough for giving me and cyprus a place in the developmental observer. this article empowers all of us on the island who are working constantly to implement family centre care. i also need to congratulate you as this issue has so much interesting and useful information on so many levels. it is definitely worth reading! pani pantelides pt nidcap professional consultant neonatal physiotherapist and early intervention specialist nicosia, cyprus “eloquium est argentum; silentium est aurum.” (speech is silver, silence is gold.) old roman saying “don’t speak until you can improve on the silence.” attributed to henry simmons, md, mph, facp, 1990 we all know the challenge of supporting nurseries to become calm and quiet places where an infant may hear the soft comforting murmur of the parents’ voice speaking or singing. the deleterious effects of high levels of “noise” in nurseries, toxic to all, infants, families and staff alike, are undisputed. it is all the more important, therefore, to meet the challenge we face in the nursery by first becoming steady and trustworthy sources of calm and quiet ourselves. finding and maintaining the silence within so that we may assist others is a continuing process and often a real struggle. our environment is polluted with sound, taxing and toxic to our well-being. what is it about humans that making noise is such a pervasive phenomenon? our car doors beep when we open them and again when we close them; beeps remind us to take action with our seatbelts, washing machines and coffee maker alarms. pedestrians walk about with ear buds that pipe music or podcasts, often loud enough for others to hear, directly into their ears and brains. waiting rooms are pervasively equipped with television sets often set at high volume levels and non-adjustable. airports, already oppressive with loudly rattling and clanking luggage carousels, provide travelers with continuous announcements and television newscasts set to increase in volume automatically when a plane arrives and passengers come through the gate into the waiting halls. we attempt to be heard in conversation by speaking at high volumes against this background din. neighborhoods and whole towns complain about the noise pollution from commuter trains, truck and bus routes; some even must endure life beneath the flight paths of local airports. communities insist on highway walls to gain at least a psychological protection. every so often when it becomes all too much, we attempt to regain our balance, “flee into nature,” leaving our electronic devices behind to refresh ourselves, or so we hope, in the quiet and silence of a forest, the mountains, a lake or the ocean. nature’s sounds differ remarkably in their effects on us from the sounds we generate through our technological advances. we fail to recognize this disconnect and as a result our industries spend too little effort on designing and producing psychologically friendly, that is, quiet equipment. too little aware of our deeply rooted biological vulnerability, we attempt to overcome our sub-cortical responses by cortical override. while our brains have developed impressive habituation mechanisms, this habituation comes at a high cost and this cost often takes us unawares. 2015 vol. 8 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages the implementation of developmental care and assures the quality of the newborn individualized developmental care and assessment program (nidcap) approach in all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international continued on page 2 table of contents the importance of silence ....................... 1 supporting families .................................. 6 family voices ............................................. 8 developmental continuum of neonatal sucking performance ............ 11 25th annual nidcap trainers meeting, segovia spain ........................ 16 developmental research ...................... 19 developmental resources .................... 22 our son: nicolò leon gargano ............. 24 the importance of silence heidelise als, phd “learn to get in touch with the silence within yourself, and know that everything in life has purpose. there are no mistakes, no coincidences, all events are given to us to learn from.” elisabeth kubler-ross 2 • 2015 • developmental observer at the beginning of every summer my family and i take our first hike of the season up little deer leap in central vermont. it is a grade-3 hike, which takes about an hour and a half up. it is well worth the beautiful view of pico peak, the north face of mount killington, the coolidge range, and the sherburne pass. while we walk, after leaving the car at the trail head, the woods become ever quieter; our steps stir up leaves and an occasional rabbit or partridge. the wind’s rustle in the trees is soothing and familiar. yet, finally at the top, looking forward to the rest and view, i am always disappointed, remembering the reason for my annual, yet quite ineffectual, resistance to this particular climb. a strange distant rumbling permeates the quiet. my husband and the children respond to my discomfort by asking: “what rumbling?” to which i reply “can’t you hear the traffic way down on route 4.” edging to the ledge drop, we see it down in the valley, the ant trail of cars up and down the highway. in vain, i attempt to tune out the sound. everyone else seems to delight in nature’s peacefulness. “one square inch of silence” hardly a place remains in the world that is truly silent, still, tranquil. this, almost spiritual quality, is necessary for silence of the mind, an inner peace and a clearing of our pressing thoughts and preoccupations. to “hear silence,” brings openness, inner quietude, an attunement to nature’s sounds, and to our inner selves. there are fewer than a dozen quiet places left in the us, places where natural silence reigns over several square miles. quiet is now measured in minutes, the number of minutes of the absence of noise encroachment. a silence of 15 minutes is extremely rare in the us and long gone in europe, except in the northern most regions of finland and norway1 (p 13). our ever higher consumption of fossil fuels and the technologies they promote translates into more and more noise pollution. “even far from paved roads in the amazon rain forest the drone from distant outboard motors on dugout canoes and from the beep from a digital watch of the guide”1 (p 13) intrudes on the sounds of nature. in the us, the national government protected parks provide the hoped for places of escape from the noise and bustle of everyday lives. gordon hempton, one of the few acoustic ecologists, has mounted a national campaign to protect at least “one square inch of silence” in the hoh valley in the olympia national park in washington state. he quotes william h. stewart, surgeon general (1965-1969) under l. b. johnson, “calling noise a nuisance is like calling smog an inconvenience”1 (p 207). air-tourism is on the increase. olympic national park is the most likely area in the us to retain its natural quietude due to almost continuous rain or overcast skies, reducing air tourism. yet even this pristine acoustic environment receives no special protection. tours on demands such as those offered by vashon island air advertise: “we fly past mount olympus and deep down into the valley of the hoh river, the only non-tropical rain forest in the world.” and not a single person on the park’s staff is trained in acoustic ecology. business and profits trump silence. how long will hempton be successful in protecting his “one square inch of silence?” by the time a single airplane’s sound has travelled far enough to dissipate below audible levels, many square miles have been polluted. and anyone seeking solace will feel disappointed, “unbathed” by the cleansing power of quiet. the omnipresence of anthropogenic sound sound resulting from the influence humans have on the natural world is termed anthropogenic sound. this sound is for the most part noise, i.e. sound that is loud and/or unpleasant or that causes disturbance; it may have irregular fluctuations that accompany a signal but are not part of it and tend to obscure it; it may be confused, senseless and it is always undesired. noise has become a modern plague found everywhere, at all times, and often at unsafe levels. it has become so prevalent that we take it for granted. it is so overlooked, and so systematically unmonitored that it is not included among the metrics that constitute more than 150 countries’ rankings in the environmental performance index (epi)2 (fig. 7, p. 18) annually issued by the yale university center of law and policy to monitor the protection of human health and the protection of ecosystems from environmental harm. nine issues with a total of twenty indicators are addressed: health impacts (child mortality); air quality; water and sanitation; water resources; agriculture (pesticide); forests (change in forest cover); fisheries (fish stock); biodiversity and habitat protection; and climate and energy. but noise pollution is not among them. meanwhile our cities grow more toxic with noise, and we “drift towards a nation of shouters. the sound of our footsteps has all but disappeared”1 (p. 322). a semi-annual publication of the nidcap federation international ©2015. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor rodd hedlund, med associate editors deborah buehler, phd sandra kosta, ba gretchen lawhon, phd, rn, cbc, faan associate editor jeffrey r. alberts, phd for science contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer developmental observer • 2015 • 3 archeo-acoustics this has not always been so. our world used to be much quieter. so quiet in fact that until recently anthropologists paid little attention to the acoustics of ancient environments, thus overlooking the implications and impact of such quiet daily living conditions. emergence of the novel fields of “acoustic anthropology” and “archeo-acoustics” reflects the increasing interest in this topic. steven j. waller, a biochemist and acoustic anthropologist by avocation, describes a natural occurring acoustic phenomenon appreciated by many early civilizations, which had been intentionally reproduced, to break the silence of earlier times, namely echoes. echo myths are found in many cultures, often attributed to supernatural entities ,3 such as the native american tales of spirits who speak through portals in rock walls. these ancient myths show that echoes were widely worshipped as divine gods, were considered to be the “earliest of all existence” and were systematically sought out. when not found naturally, they were created. ancient builders designed subterranean soundscapes as stirring as any modern movie special effect. when priests at the temple complex of chavín de huántar in central peru sounded their conchshell trumpets 2,500 years ago, tones magnified and echoed by stone surfaces seemed to come from everywhere, yet nowhere, supernatural and otherworldly. but there was nothing mysterious about their production. according to archaeologists at stanford university, the temple’s builders created galleries, ducts, and ventilation shafts to channel sound, displaying not only expert architectural skill but also acoustical engineering prowess.4,5 the findings add to a growing body of research suggesting that controlled natural sound was more important to our ancestors than archaeologists once realized. today we live in a less thoughtfully controlled sound-saturated society, full of ipods, thunderous special effects in movies, and thousand-watt boom car stereos. these modern acoustic environments result in sonic cacophony while our ancient ancestors may have sculpted their soundscapes in an attempt to reach the divine. until very recently, archaeology has been strictly visual.6 the acoustic studies at chavín de huántar and elsewhere show the value of broadening the field of archeology into acoustic archeology and helping us understand the roots of our manufactured sound world. the dangers of modern anthropogenic noise in stark contrast to the purposeful spiritual, even mystically intended sound phenomena, our modern day technology-generated pervasive sounds not only have little to do with the spiritual but are destructive. here a few examples. “where have all the songbirds gone?” is a popular lamentation of today’s bird watchers. the audubon watchlist in 2000 listed 25 species of us songbirds in decline; by 2007, 59 species were on the endangered list and an additional 119 species were listed as near endangered. climate change is a big issue and noise pollution goes hand in hand with climate change. increase in fossil fuel production underlies both. our landscapes are losing their voice. bird song-ranges are shrinking. birds have been found to adapt their songs so as to be heard above the din of rural and urban noise pollution. and whole song repertoires already have been lost. human activity has caused an, in evolutionary terms, sudden rise in, especially, low-pitched noise levels.7, 8 these frequencies are detrimental to birds through direct stress, masking of predator or associated danger calls, and by general interference with acoustic signals, which serve mate selection, offspring protection, and territory defense. significantly reduced reproductive success has been documented in noisy territories. 9, 13 similarly toxic noise effects have been documented in oceans where they affect large mammals such as dolphins and whales. oil industry’s seismic explorations and drilling, the low rumble of the ever growing number of commercial ships and, likely most harmful, military sonar, have been implicated in the increasingly high number of dolphin and whale strandings and deaths. despite these concerns all efforts to modify or eliminate, especially military sonar emissions, have been overruled by presidential decision claiming paramount security interests of the us.14, 16 the word “noise” stems from latin nausea, meaning disgust, annoyance discomfort, and literally seasickness. the later old provencal nauza refers to quarrel. for humans noxious sounds and smells are impossible to ignore, processed by sense receptors which have evolved specifically to protect us from toxins. while we have passed odor laws, we are slow to acknowledge the need for noise pollution laws. william stebbins17 points out that in the course of evolution mammals capitalized on the sense of hearing more than any other vertebrate or invertebrate group. the range of human hearing far surpasses the requirements to hear spoken language or even to appreciate music. human hearing graphed by frequency range and decibel level shows that human speech encompasses the center of the range. sounds produced by musical instruments and appreciated by the human ear extend well beyond the human vocal range. yet even beyond the sound range of our musical instruments there are many sounds, namely natural sounds that the human ear is capable of perceiving. human hearing is exquisitely sensitive. moreover, the human hearing mechanism is always turned being and becoming occurs in being held, being in the moment. are we prepared? p hotography by c hristopher h opkins a ls d uffy. 4 • 2015 • developmental observer on.18 after humans have habituated to a sound, and even in sleep, the human body nevertheless responds to noise. the elicited nervous system, hormonal and vascular changes, the fight or flight response, has far reaching consequences. noise, even at levels that are not harmful to hearing is perceived subconsciously as a danger signal, alerting epinephrine, nor-epinephrine and cortisol level secretions .19 and loud enough noise leads to hearing loss: the world health organization (who) based on the work of berglund and lindvall 20 among other research, recommends that unprotected exposure to sound levels greater than 100 db, (jackhammers, snowmobiles), should be limited in duration (4 h) and frequency (four times/yr). the threshold for pain is usually given as 140 db (boom-cars). adults should avoid exposure to impulse noise (gunfire and other intense brief bursts e.g. from firecrackers, cap pistols, and other toys) above 140 db with a limit of 120 db for children. exposure may result in sudden and permanent hearing loss. levels greater than 165 db, even for a few milliseconds, are likely to cause acute cochlear damage. as stated by the league for the hard of hearing: “ears do not get used to loud noise they get deaf.” even when not leading to hearing loss, noise pollution interferes with spoken communication. by affecting language comprehension it may lead to a number of disabilities and behavioral changes such as problems with concentration, fatigue, uncertainty, lack of self-confidence, irritation, misunderstandings, decreased working capacity, disturbed interpersonal relationships, stress reactions and increased aggression. some of these effects may lead to increase in the frequency of accidents, disruption in the classroom, and impaired academic performance.20-22 particularly vulnerable groups include children, the elderly, and those not familiar with the spoken language.23 despite the evidence of the medical, social, and economic effects of noise, including those incontrovertibly resulting from sleep disturbance, noise pollution is increasing in our cities. it impairs the ability to enjoy one’s property and leisure time and increases the frequency of antisocial behavior. noise makers and the businesses that support them are as reluctant as smokers to give up their bad habits. it is clear from the statistics on reduction of smoking, that laws can change undesirable behavior; laws could also change noise reduction in ways that would benefit society as a whole. the urgent importance of chosen silence as a direct response to the continuous auditory assault, many are choosing to offset the toxic effects with chosen silence, be it through yoga, retreats, meditation or other silent practices. historically, chosen silence has been linked to religious practice such as the vows of silence taken by christian monastic orders and also known as mauna [the silent one] in hinduism, jainism, and buddhism. examples from antiquity are pythagoras of samos (circa 570 – circa 495 bc), the ionian philosopher and mathematician, who imposed a strict rule of silence on his disciples; in ancient roman religion, the vestals or vestal virgins (circa 720 – circa 380 bc), priestesses of vesta, goddess of the hearth, also were bound to severe silence for long years. prophets have gone into the wilderness for long periods of silence and meditation. christian religious orders such as the benedictines, cistercians, trappists, carthusians, and carmelites incorporate silence to this day as one of the essential rules of their communities. other examples are days of silence such as good friday in the catholic tradition or the sabbath in judaism, intended to promote better understanding of and dedication to a higher being, to achieve enlightenment. often such religious or spiritual accounts accept “ineffability” i.e. the effects of such silence cannot be readily expressed in words. true mystics and hermits of both western and easter traditions typically have little to say about their experience of silence. for instance, the biographer vicky mackenzie24 reports that jetsunma tenzin palmo, a british buddhist nun, who spent three years high in the himalayas in radical silence, publically said only: “well, it was not boring.” since the 18th century there are more secular sources of silence stories. the romantic movement writers like william wordsworth and henry thoreau, while theist in their understanding yet militantly non-religious, emphasized the value of nature and silence. onward from the mid-nineteenth century many accounts speak of lone adventurers, explorers of remote areas, mountain climbers, solo sailors, hikers, even swimmers, solitary by choice, they seek silence and remove themselves from their social day to day environments. they also largely tend to be mute about their inner emotions as if it defeats the very nature of their experience. in “a book of silence” sara maitland 25 reports an extraordinary example referring to the sunday times sponsored, first “golden globe” race in 1968, of sailing single handedly nonstop around the globe (pp. 43-45). two experienced solo-yachtsmen, robin knox johnson and bernard moitessier independently from one another and the times “golden globe” race had already decided and prepared to navigate the globe. the race therefore was framed such that it was impossible not to enter, by default making both participants. moitessier announced that the very idea of such a “race” made him nauseous. he had made a “pact with the gods” in reparation for what he considered an earlier “dishonest” book that he had written. participation in the “race” would sully the whole enterprise. nine yachtsmen were entered in the race. only one finished, robin knox johnson. for all others it was not the sailing itself that proved the hurdle, no one was killed by the waves or the wind, but it was the emotional response to it. their will was altered by the silence and isolation. for instance, moitessier chose to round the cape of good hope a second time, headed back across the indian ocean from whence he had just come; on into the pacific, finally landing in tahiti. in his diary he wrote: “i really felt sick at the thought of getting back to europe…; does it make sense to head back for a place knowing that you will have to leave your peace behind?.… i feel a great strength in me. i am free, free as never before. joined to all nonetheless, yet alone with my destiny.”26 (p. 164),25 (pp. 56-57). this experience of strength and freedom is what maitland25 considers a common effect of such chosen silence. maitland describes a recognizable sequence of emotional experiences of being in silence, based on her review of many accounts by others and on her own six-week period of planned silence living alone in a small cottage on the isle of skye, the most northerly island of the inner hebrides of scotland. she recounts, developmental observer • 2015 • 5 that the first result is an extraordinary intensification of physical sensation, smells, taste, listening and hearing sounds such as the wind, the song of a bird, the experience of seeing color, the sensations of temperature, cold, wet, warm etc. sensations become direct and total. as maitland puts it: “it felt entirely now and physical”25 (p. 49). this then leads to an intensification of emotions, with crying, laughter, excitement, and anxiety quite disproportionate to the occasion, yet normal appearing at the time. next is the experience of disinhibition. those living in planned silence may abandon their daily routines of personal hygiene and customary dress codes as “banal vanities.” the public self becomes stripped away “leaving the true self naked” as arctic explorer and geologist augustine courtauld stated, having lived for five months in complete solitude in a tent on top of the greenland ice-cap27 in25 (p. 54). a third experience maitland25 describes is that of hearing voices, often perceived as helpful and joyous rather than worrisome or pathological, and apparently serving communication of one’s stressed self to one’s more optimistic self. additionally, natural sounds may become imbued with language-encoded meaning. the wind or ocean waves seem to be speaking or singing. pinker28 describes the “language instinct,” as the instinct to make sense of what one does not understand, a translation into language of non-language phenomena. our brain is an efficient interpreter of sound. as john cage,29 composer and music theorist, has said: “there is no such thing as ‘real’ silence. there is always some sound, even if it is only the sound that our body makes, our breathing, our heart beat.” finally, maitland speaks of the feeling of being given an incredible gift which she terms “givenness” 25 (p. 62). it engenders an indescribable joy, a bliss, intense happiness that moves into a feeling of “oneness” and an extraordinary sense of connectedness, a connectedness to the universe, to absolutely everything 25 (p.63), a feeling of communion and complete peace and certainty of being, without “pride or fear or surprise …where each thing is simple... free to the right, free to the left, free everywhere” 26 (p. 164),25 in (p. 65). this gift of connectedness is both integrative and connecting the self to something larger, the world, the other. feelings of a loss of boundary between the self and the other, the self and the cosmos, even a sense of boundary confusion may occur at this stage. it may become harder to keep track of time, and track of danger. a certain exhilarating daring, almost a state of rapture may ensue, where everything appears feasible and delightful. maitland interprets it as a shaking off of the rules, boundaries and safety codes of daily life, of the culturally instilled protection from and fear of risk taking. such liberation seems freeing, induces joy and even giddiness, as a child might experience when taking a daring step. it engenders a “thrilling peril”; “a state of bliss that is simultaneously fiercely joyful” for which maitland25 (p. 74) uses the french term “jouissance,” a joy that bypasses the moderating and mitigating influences of reason, an “over the top,” unmitigated joy, as children experience quite naturally and that wordsworth bemoans because of its fleeting nature in his “ode: intimations of immortality from recollections of early childhood.”30 prolonged silence appears to help us regain this state of “exhilarating consciousness of being at risk, in peril”25 (p. 78), this sublime daring, even if only for limited periods. the ineffability of experience ties in with the feeling of bliss. the lasting benefits of planned silence experiences connect us back to ourselves and those around us, “without pride or fear or surprise” to use moitessier’s words. these are the personal attributes that our work as developmental professionals demands and expects of us. this is why the vulnerable infants and their families trust in us and our care. it is our professional responsibility to make room for such silence and its effects in ourselves, so that we can be ourselves fully. silence for years or months or even six weeks, as maitland chose, is unrealistic for most of us. yet the awareness of, and planned cultivation of the many moments of silence that offer themselves daily are feasible for all of us. the moment we pause in greeting a familiar bird, in watching a flower, observing a person, the pause of listening and tuning in, if only quite simply into our own breathing as meditation teaches us, this is well available to us all. and all of us have the power to cultivate actively an increased awareness of the intrusive, frequently gratuitous technology-based noise that we create ourselves. in doing so we can help to reduce and eliminate it; we have the power to educate, train and practice increased awareness of our often idle chatter, and our anxious overtalking to camouflage our fear of losing our public self, and “being naked”, our true selves. the practice of silence will give us the strength and the joy to hold the moment, and hold the other in the moment and in silence. being and becoming occurs in being held, being in the moment. are we prepared? acknowledgement: krista tippett’s interview with gordon hempton inspired me to write this column. the interview, entitled ‘the last quiet places silence and the presence of everything’, was aired as part of her national public radio (npr) program series ‘on being’. references on page 25 every so often when it becomes all too much, we attempt to regain our balance, “flee into nature”, leaving our electronic devices behind to refresh ourselves…in the quiet and silence of a forest, the mountains, a lake or the ocean. p ho to gr ap hy b y c hr is to ph er h op ki ns a ls d uf fy . 6 • 2014 • developmental observer s u p p o r t i n g fa m i l i e s melissa r. johnson, phd in the last several years, the number of babies identified as needing medical assistance to wean from narcotics, to which they were exposed in utero, has increased dramatically in many parts of the united states and in several other countries. this group of babies includes both infants whose mothers are enrolled in treatment programs in which they are provided methadone or buprenorphine, in the context of appropriate psychosocial therapy and supports, as well as infants of women struggling with an addiction to prescribed narcotics, illegally obtained narcotics, or “street drugs” such as heroin. in the last several months, a number of nicus in our region have admitted more babies experiencing neonatal abstinence syndrome (nas) with a census as high as a quarter of the nicu population. this relatively new group of babies has created challenges for all providers, but especially bedside nurses; on the positive side, many of the strategies and approaches found to be helpful in nidcap care of preterm infants are also extremely helpful in caring for these babies and their families. medical issues mothers who are working to overcome their disease of addiction are often most effectively treated with medications such as methadone and buprenorphine, which combat their cravings and increase their chances of successful return to a productive life. they are typically counselled in their treatment programs that trying to “come off” these medications is medically dangerous to their infants, and increases their chance of relapse during this vulnerable periods.1 thus, despite the fact that between one half and two thirds of their babies will require medical intervention to wean off of their physiologic dependence on such drugs, these mothers are making the correct choice for the health of both themselves and their infants. after delivery, infants are observed for five days, a necessary period to determine whether the infant will show symptoms of withdrawal. once these symptoms begin, structured symptom observation tools2 are employed to try to quantify the degree of the baby’s symptoms, and make appropriate decisions about the amount and type of medication needed to diminish the infant’s symptoms. the same tools are then used to guide the gradual reduction of medication until the baby is symptom-free without medication. developmental issues hospitals vary in their facilities available for the care of these babies and families. in some hospitals, babies are cared for in typical newborn nurseries, which tend to be busy, active, noisy, and limited in parent participation space. nicus with adequate support for parent participation, and a calm atmosphere, represent a step up in terms of meeting the needs of the infant and family. nicu’s with single family room facilities allow families to stay with their infants in a supportive environment, and provide the comfort measures that have been shown to diminish symptoms and shorten the weaning process. many of the strategies that are comforting for babies weaning off narcotics are very similar to those that support premature infants. individualizing support based on the cues of each baby is critical. clearly, nurseries whose staff are trained and supported in providing nidcap based care have many resources to support these babies. infants often benefit from swaddling, sucking opportunities, skin-to-skin holding, gentle vestibular stimulation, limited environmental sound and light, and other strategieswhich, of course, will change over time as the baby matures and need to be individualized in response to the cues of the infant. additionally, awareness of the nutritional needs and feeding challenges experienced by some of these infants is critical to providing maximally supportive care.3 family support issues the long-term outcome of babies treated for nas is clearly heavily dependent on the ability of their mothers to remain in treatment, to manage their disease of addiction, and to feel comfortable, confident and competent in the care of their infants. the last part of this statement applies to all families, but is particularly relevant in babies born prematurely or with other developmental challenges. professionals supporting families impacted by addiction may find that their challenges are somewhat different than typically seen in parents without these issues, so that even if they have extensive experience in the nicu, they may need to educate themselves about the most effective ways to understand and support these families. there is limited published research on this issue, though a paper by cleveland and bonugli4 based on a small qualitative study, highlighted issues that were very consistent with the experiences of this author and other colleagues. they note that mothers with a history of substance abuse are disproportionately impacted by histories of trauma, abuse, mental illness, and other severe life stresses. they report often overwhelming feelings of guilt and shame, and are acutely sensitive to feeling judged and misunderstood by professionals. treating babies and families affected by neonatal abstinence syndrome in the newborn icu a new challenge for family-focused developmental care developmental observer • 2015 • 7 while some of them find support in their extended families, others report rejection and judgment by family members as well. when nursing staff and other professionals reach out to these mothers and explicitly support their efforts, successes, and caring for their babies, these efforts are often deeply appreciated and potentially healing. fortunately, the nidcap approach to care for all families in the nicu offers powerful strategies for supporting such communication. in the author’s nursery, ongoing efforts are in place to support breastfeeding and skin to skin care, family involvement in understanding and contributing to the scoring of nas scales, and daily communication with the medical team. single patient rooms, with 24-hour parent participation, provide maximum opportunity for parents to be the primary caregivers for their infants, although for some families, this is a process that takes time and excellent communication skills to encourage their assuming what may seem like an intimidating role. the offer of a neurodevelopmental assessment prior to discharge, using the brazelton neonatal behavioral assessment scale (bnas)5 or the assessment for preterm infants’ behavior (apib),6 with parent observation and participation, has facilitated many parents to see their infant’s strengths and competencies after many days of focusing on their signs of discomfort during withdrawal. staff support issues for nicu nurses, as well as for the developmental and medical professionals in the unit, reflection and education are equally important as this new role evolves. in the author’s unit, several efforts are underway to meet these needs. a series of reflective sessions led by the unit psychologist both address the emotions that the nurses experience when they care for babies with nas and their families, and provide information about the disease of addiction, especially as it impacts women, and about current approaches to treatment. meetings facilitated by the unit social worker and psychologist are underway with community providers of treatment services, so that the care provided by these programs and by the nicu are as coordinated, consistent, and mutually supportive as possible. as the nicu team learns more about drug treatment, and the staff of the treatment programs learn more about the process of treating nas, the hope is that outcomes for infants and families will continue to improve. finally, it should be stated that much remains to be learned about the best ways to care for babies and families wrestling with this difficult and challenging problem. multidisciplinary approaches, and collaboration between the world of substance abuse treatment and the world of newborn care and follow-up, is needed. research in this area is challenging for many reasons7 and demands resources and commitment to ensure that infants, mothers, and other family members experience the best possible outcomes. references 1. soyka m (2013) buprenorphine use in pregnant opioid users: a critical review. cns drugs. 2013; 27: 653-662. 2. jansson, lm, velez, m, & harrow, c. the opioid exposed newborn: assessment and pharmacologic management. journal of opioid management. 2009; 5(1): 47-55. 3. hudak, ml, tan, rc, the committee on drugs, and the committee on fetus and newborn. neonatal drug withdrawal. pediatrics. 2012; 129(20): e540-e560. 4. cleveland, lm & bonugli, r. experiences of mothers of infants with neonatal abstinence syndrome in the neonatal intensive care unit. 2013; 27: 653-662. 5. als h, lester bm, tronick ez, brazelton tb. brazelton neonatal behavioral assessment scales (bnbas). journal of abnormal child psychology. 1977: 5(3). 6. als h, lester bm, tronick ez, brazelton b. towards a research instrument for the assessment of infants’behavior (apib). h. e. fitzgerald et al. (eds.), theory and research in behavioral pediatrics. springer science+business media, new york, 1982. 7. jones, he, fischer, g, heil, sh, kaltenbach, k, martin, pr, coyle, mg, selby, p, stine, sm, o’grady, ke, & aria, am. maternal opioid treatment: human experimental research (mother)approach, issues and lessons learned. addiction. 2012; 107 (suppl. 1), 28-35. nidcap care in the moment a mother’s hands support her daughter during care. annual nfi membership meeting october 17, 2015 1:30pm – 3:30pm (mst) sheraton wild horse pass resort & spa chandler, arizona, usa hosted by st. joseph’s hospital nidcap training center, phoenix, arizona the 26th annual nidcap trainers meeting october 17– 20, 2015 sheraton wild horse pass resort & spa chandler, arizona, usa hosted by st. joseph’s hospital nidcap training center, phoenix, arizona (by invitation only) p ho to gr ap h by m el is sa b ar ne s 8 • 2014 • developmental observer fa m i ly v o i c e s debra paul, otr home at last have you seen the beauty of the rose while walking in the snow? have you smelled its fragrance in the air before it started to grow? have you felt the softness of the snow even though it wasn’t there? have you closed your eyes and opened your heart to believe what your mind wouldn’t dare? i have. i could see our little babies before they ever came to be. and every time i closed my eyes my prayers were not for me. they were for the little ones that i did not yet know. each prayer was for a miracle; our blossoms in the snow. –lisa pelzer vetter this poem was penned many years ago by my sister lisa, a freelance writer, and captures how i felt from the first moment my husband and i found out that we were pregnant. when we discovered that we were having not one, but two babies, my hopes and prayers doubled. parents prepare for parenthood in many ways – from decorating a nursery to deciding on baby names. when a healthy, fullterm baby is born and sent home with his or her parents after a short stay in the hospital, the mother can experience an emotional roller coaster of postpartum hormones, sleep deprivation, recuperation from childbirth itself, and taking care of a newborn; generally speaking, the adjustments that go along with having a beautiful new family member may take place gradually. baby and parents have time to grow together. but what about the parent(s) of a baby who requires special care in the nicu and beyond? what about those parents? parents like me…and some of you. what about us? although i had been an occupational therapist for several years before our babies were born, the moment i laid eyes upon them and they were swiftly taken from my arms to the nicu, my professional cap came off and the mom cap was put on. so i feel as if i’m writing this article from both sides of the fence – as a professional and as a mother. as parents of babies with special medical needs will tell us, there seems to be no time to learn things gradually. they have to learn...fast. they have to adjust...quickly. they need to know... now. they need to become an advocate. their baby’s advocate. and then...finally, it is time to bring their baby, who spent time in the intensive care nursery, home. time to celebrate, right? no more alarms, no more tubes, no more interruptions. parents have looked forward to this day every single minute their baby has been in the nicu. they breathe a sigh of relief. “we did it! we get to leave the clinical walls of the hospital behind and go home!” gulp. reality sets in. relief turns to apprehension. specialists in the nicu are available to intervene in an infant’s complex situation at a moments notice, but now with discharge looming, parents begin to wonder: “what do i do if…? am i fully prepared for this?” the journey kip dickson is the mother of jessa, now 15 years old, was delivered late preterm and experienced several health related crises for several months after she was born. jessa was diagnosed with a genetic deletion. kip shares one of her reflections when jessa was just five days old. “she was sound asleep; naked except for a diaper, lying on her daddy’s chest. as they both lay with peaceful breaths, her words came through me and the poem we wrote together set the stage for “jessa lessons” to come. i was to slowly discover what an inspirational teacher she is. i am still in awe of how an incredibly wise and innocent soul could so deeply touch the lives of all who would welcome her in and truly listen.” – kip dickson (reproduced with permission) a family realizes very quickly that the voice of advocacy does not stop once they leave the intensive care setting. in fact, this transitional phase is one of the most important that the family will go through. the need to be proactive is essential. jessa and her family. kent and kip are in the background and the girls are (left to right-jillian, jessa and stella). developmental observer • 2015 • 9 maria hopfgarten is the lucky mom of jacob and sarah, and wife of joakim. jacob is a 9-year-old strong little fighter who has a mitochondrial disorder. he has experienced multiple hospitalizations throughout his life and his family has remained steadfast in advocating for him during what has certainly been very stressful times when they were not sure if he would live. despite jacob’s medical challenges, he is a happy loved boy who enjoys life to the fullest despite his challenges! his parents are both from sweden and they have lived in the united states for the past 14 years. maria loves to make a difference in the lives of others, and is inspired by jacob every single day. his parents may have given him life, but maria says that he teaches them about life. “i think with communication, comes partnerships. over the years, we have built very strong relationships with jacob’s key doctors. we know who will support us in making the right decisions for our son, and we always involve them in any major decisions. we have a vested interest in our son together.” – maria hopfgarten these two families understand the value of parental advocacy and have proven it time and again during their children’s lives. it is our responsibility as healthcare professionals to help support and build upon all of our parents’ skills so they can become effective advocates for their child – in the hospital and beyond – just as kip and maria did and continue to do every single day. so, how can we help make this happen? how do we promote a proactive, nurturing environment that will set the stage for the family to thrive in the hospital, and after discharge to home? cultivating two-way communication is critical. there needs to be an open channel for both the family and the healthcare providers. professionals and families are equal partners in the child’s care and outcome. this means that both parents and caregivers need to pause and allow time for listening (really listening!), reflection, questions, and input. as caregivers, we must take the lead by encouraging families to engage in honest, robust dialogues. soliciting input and insights from parents is one of the primary responsibilities of caregivers, not only while a child is hospitalized, but especially with the transition to home. awareness that parents may be in crisis mode when their child is very sick, is crucial according to maria, who speaks from first hand experience. providers must take the lead in promoting an open line of communication and assure parents that their voice is being heard, because we truly do need their voice. positive reinforcement is required often for parents to keep speaking up and out, and as parents begin to settle into the art of advocating for their infant, health care professionals should reinforce the value of their insights that might not have otherwise surfaced. we learn that the parent’s voice is just as important as ours. their stories kip and maria agreed to share a few more of their insights to give us a bird’s-eye view on the importance of building trustworthy relationships with care providers. they help us understand the significance of the parental voice when caring for a child with special healthcare needs. and as they will attest, a journey that starts in the nicu does not end there especially when dealing with on-going chronic health issues. kip: “when she arrived, almost three weeks early and weighing 4 pounds, 2 ounces, my husband kent and i were in shock. as health problems were discovered, urethral reflux at 3 days old, and an atrial septal defect at 5 weeks (later repaired at 4 ½ months with open heart surgery), we were eventually sent to the geneticist to begin the long and excruciatingly painful search for what was “wrong” with our daughter. as anyone who has traveled into the land of genetics knows, you do not return from the trip the same. the practice of reducing a child to numbers, measurements, and irregularities is about as agonizing and disrespectful a procedure as i have ever been a part of. they strip little ones of their dignity, but jessa wouldn’t let them touch her spirit. eight months later, the diagnosis of genetic deletion/4p was finally stamped on her chart. the geneticist’s job was completed. they had closed the case of “why jessa won’t grow.” “i used to feel a desperate need to explain to people why jessa was so little. i would receive looks of shock and disbelief when i would honestly answer the question of “how old is your baby”? sometimes i even used to tell them all about her genetic deletion and how it made eating and growing so difficult for her. most people actually weren’t that interested, and the usual response was sort of an uncomfortable “oh i see,” as they took a couple of steps backward. i realized that they don’t “see,” they could never really understand, and certainly they are thankful that they don’t.” (reproduced with permission) as nidcap professionals, we play an important role in how we influence our colleagues and caregivers to, as kips states, “understand.” it is our duty to be tuned in to the infant and family’s voice, and once the family leaves the hospital, the family’s voice becomes more important than ever. they are the ones who have critical information to share with the medical team. their input is essential to a child’s ongoing care and treatment plan. parents’ insights, data and constant monitoring of their child’s condition become the medical team’s best resource, and one of maria, joakim, jacob and his older sister sarah 10 • 2015 • developmental observer the most important things we can do for families is to help them believe in the value of their own voice. we have all heard of the “360 degree review.” essentially, we improve our view by soliciting feedback from all the people around us – including parents. the optimal care model is to stimulate and nurture a healing environment where the child is wrapped in the concept of the 360 degree view. identifying key stakeholders and actively engaging them in the care model yields an environment where everyone thrives. at the end of the day, everybody in the equation is responsible for the quality of care and attention to detail that only a family can bring. q & a question: we know how important it is as health care professionals to support and build upon parental skills to help family members become effective advocates for their infant in the nicu and beyond. what is your advice for professionals and for parents to make this happen? kip: “learn to trust yourself and your gut instincts. it can take a while to get your footing and speak with authority, but with time you begin to get more comfortable and better able to advocate for your child. if you believe you’re not being listened to or respected, ask for a second opinion. sensitivity is crucial for health care professionals when delivering difficult information to parents, and while most providers do this well, many do not. the experience my husband and i had with jessa’s geneticist was truly devastating. what you say to families can stay with them forever.” maria: “parents know their children best. they will know, before healthcare providers do, if something is not right. it might be a subtle change, or it might be an intuition that something is wrong. by communicating that to your healthcare team, it could very well make a huge difference in the care the child is receiving.” question: as a parent of a child with special health care needs, how did you build on your communication skills along the way to feel more comfortable and competent in your role as your child’s advocate? kip: “parenting in the neonatal intensive care unit can be a very lonely and alien experience for families, and early on, it can be hard to know what questions to ask. throughout our journey it has been invaluable to have support from other parents who have been down this path. i was so fortunate to have three extraordinary mom friends who guided me through the early years, and continue to do so 15 years later. all of our kids have different issues, but the underlying themes are the same. having people who truly do understand the journey has saved me many times. and now that i consider myself an “experienced” special needs mom, i love nothing more than talking to new parents who are going through similar experiences. having support systems is key.” maria: “i have often thought that i am lucky that i had a long career as a people manager before having jacob. communication was key in my work to be a good manager and leader. i realized quickly that this was probably the most important skill in working with jacob’s health care team as well. i researched jacob’s conditions and diagnoses so i could have an educated discussion with his healthcare providers. if i didn’t agree with his doctors, i always respected their input but made a case for what i believed was the right treatment or next steps. i once had a doctor say “we are humans too.” i try to remember that, and always meet them in the middle. there were times when i had to take a stronger stand with jacob’s team, when i did not agree with his medical team. i will spend time preparing my arguments and also involve people who i know will support my decisions. it can be exhausting to advocate for your child, but i know if i don’t do it, who will?” kip and maria are clearly engaged parents all the more reason for us, as caregivers, to have our radar tuned in to capture these important insights. it is critical to nurture relationships and help make the journey home from the hospital a smooth one. although we are professionals, the mantra of “caregiver knows best” is not an optimal mindset. success is best served through a working partnership between all parties involved. maria adds, “in the intensive care setting, time is often at play. if the parent’s voice can be heard, important information can be shared up front, possibly even saving a child’s life. we know right away if something is “off” with jacob. we might notice a change in heart rate or in his breathing that doesn’t alarm any of the medical team members because it is within his range, but we know that something is bothering him because it is not within our child’s normal range. we feel we bring information to the table every time we have an interaction with jacob’s medical team, and we feel we are able to give him the best care possible because of our knowledge and perspective.” “parents bring everything to the table. if a provider has a sense of humility and treats us as the real expert in our child’s life and we work together as partners, we will continually grow and teach each other.” – kip dickson have you seen the beauty of the rose while walking in the snow? have you smelled its fragrance in the air before it started to grow? each one of these mother’s stories is the rose in the snow. throughout kip and maria’s journey, they have blossomed and grown to become strong advocates for their children and for the community of parents that share similar experiences. heartfelt thanks and gratitude are expressed to maria and kip for sharing each of their stories. maria hopfgarten serves on several quality and parent advisory committees at children’s hospital colorado. she lives in broomfield, colorado with her husband joakim, jacob and his older sister sarah. kip dickson is a montessori teacher who works and lives in boulder, colorado with her husband kent, jessa, and her two older twin sisters, jillian and stella. developmental observer • 2015 • 11 marjorie meyer palmer, m.a., ccc-slp preliminary clinical observations introduction as medical technology advances and preterm infants are able to survive in ever increasing numbers with smaller birth weights, younger gestational ages, and more medically complex diagnoses, oral feeding for these infants has become a universal concern. despite the plethora of information available on neonatal sucking and the coordination of suck/swallow/breathe in the healthy term infant, oral feeding in the preterm infant continues to be poorly understood and the normal course of maturation of efficient feeding remains controversial. it has been reported that respiration and suck are gestational age-dependent reflexes modulated in the brain stem and increasingly gestational age with maturation correlates with a lower frequency of apnea and the development of sucking rhythm.1-6 it has also been reported that experience with oral feeding results in a more rapid maturation of sucking.7,8 other studies have reported opposing views that early oral stimulation may not result in earlier weaning from nasogastric tube feeding;9,10 and that stimulation of non-nutritive sucking in preterm infants accelerates oral feeding success.11 finally it has been reported that the process of maturation is considered to be the most responsible factor for coordination of sucking ability in the infant.5,6,12,13 despite this controversy (i.e., development of sucking in the preterm infant), it is generally agreed that the sucking profiles of the preterm infant are significantly different from those of the healthy term infant.14 the well coordinated feeding pattern of the healthy term infant is characterized by a 1/1/1 coordination of suck, swallow, and breathe.15 when infants are unable to coordinate suck/swallow/ breathe they may forfeit available energy necessary for feeding and be unable to continue sucking which may result in failure to thrive. usually this incoordination is because of an inability to maintain adequate ventilation while sucking and swallowing.15 in 1979, crook defined this type of incoordination of suck/swallow/breathe as characteristic of a disorganized suck.16 other infants may demonstrate a dysfunctional suck17that may be a possible early indicator of neurological damage.15 a dysfunctional suck is characterized by abnormal movements of the tongue and jaw observed during early reflexive nutritive sucking that are not seen in the typically developing preterm or healthy term infant.17,18 these movements include excessively wide jaw excursions that interrupt the intra-oral seal on the nipple, a flattened tongue configuration with an absent tongue groove, and jaw excursions that are too short to allow for an adequate degree of suction.17 dysfunctional nomas® scores were associated with decreased transcerebellar diameter and lower dubowitz scores.19 the nomas® based upon the concepts described above, the nomas® (neonatal oral-motor assessment scale) was developed in 1983 and revised in 1990 (page 14) as a clinical evaluation of neonatal sucking patterns. this bedside observation tool enables the examiner to differentiate the normal, disorganized, and dysfunctional suck. the nomas® identifies 28 characteristics of jaw and tongue movements that are observed during a two-minute nutritive sucking sample. since 1994 professionals have been required to become reliable in the administration and scoring of this assessment in order to accurately use it to diagnosis the neonatal suck pattern in the preterm and term infant up to 44 weeks post conceptional age (pca). both the normal and disorganized categories on the nomas® have demonstrated acceptable psychometric properties20 and preliminary data suggests that the nomas® is a “reliable assessment tool that provides an objective, standardized, and observational measure” of infants’ feeding maturation.21 in addition, macmullen and dulski found that the nomas® evaluation of sucking ability correlated with gestational age, weight, and behavioral state in normal healthy newborns.22 dacosta et al. reported that this observational tool is most commonly used to assess the nutritive sucking skills of infants,23 and it has been examined more consistently and showed more consistent results in psychometric properties than other feeding assessments.20 the performance of the infant on the nomas® may also be useful in the prediction of later developmental outcome.21,24 efficient feeding is secondary to coordination of the pharyngeal swallow with respiration and the episodes of deglutition apnea are reported to decrease with maturity.25 this is representative of the maturation of the preterm infant and it has been hypothesized that “feeding is a neurodevelopmental process of maturation.”5 based upon this hypothesis, only infants with a disorganized suck pattern are described here in order to track the maturation of sucking development. early development of sucking grybowski first identified the immature suck pattern of the preterm infant as consisting of short sucking bursts of 3-5 sucks per burst followed by a pause of equal duration during which swallowing and breathing occurred.13 when an infant is not able to self-regulate in this manner, episodes of deglutition apnea resulted and these deglutition apnea events were reduced as the infant matured.25 by comparison the healthy full term infant will usually have the neurological maturation and respiratory support necessary to demonstrate a mature/continuous burst suck pattern. this pattern consists of sucking bursts of 10-30 sucks per burst, with swallowing and breathing occurring during the sucking burst, developmental continuum of neonatal sucking performance based on the nomas® (neonatal oral-motor assessment scale) 12 • 2015 • developmental observer followed by a brief pause.13 the average ratio of suck/swallow/ respiration has been reported to be 1:1:1.12,15 an infant born at term must suck, swallow, and breathe in a coordinated manner during successful oral feeding. when an infant is born prematurely these skills may not yet be fully mature or coordinated.26 in addition to the lack of neurodevelopmental maturation, infants with respiratory problems, such as bronchopulmonary dysplasia, have an even more difficult time with the coordination of suck/swallow/respiration and demonstrate low sucking pressures, short sucking bursts, infrequent swallows, and prolonged episodes of deglutition apnea.27 infants who are born prematurely may also be unable to regulate their cardio-respiratory system during oral feeding resulting in increased heart rate and decreased oxygenation. attention to cardio-respiratory regulation and the relationship between feeding performance and cardio-respiratory stability in the preterm infant may provide information as to an infant’s readiness to feed.7 adequate coordination of suck/swallow/breathe appears to be crucial for an infant to feed without episodes of desaturation, apnea, bradycardia, and/or aspiration. an alternation of the suction and expression components of suck are not sufficient, therefore, for an infant to feed safely by mouth9 and the coordination of respiration needs to be in place for successful oral feeding to occur. it has been reported that swallowing first occurs at 13 weeks and sucking at 18 weeks in utero while the suck/swallow coordination is present at 32-34 weeks gestational age. the suck/ swallow/breathe coordination necessary for a continuous burst pattern, however, usually does not occur until closer to term, at about 37 weeks post conceptional age.12 evaluation of sucking: administration and scoring of the nomas® the evaluation of the infant suck pattern was based on clinical observations as described on the nomas® (appendix a). this assessment consists of three diagnostic categories: normal, disorganized, and dysfunctional sucking that are based on 28 characteristics of jaw and tongue movement during the first two minutes of nutritive sucking on a bottle. the nomas® is also used with breast feeding infants but the evaluation requires more than two minutes. since these clinical observations were done only with bottle feeders a discussion of breast fed infants is not appropriate here. a normal suck refers to either the self-regulated immature suck of the preterm infant, or the continuous burst pattern of the healthy term infant, both of which have been previously described, and a disorganized suck that refers to “a lack of rhythm of the total sucking activity” (suck, swallow, and breathe),16 while a dysfunctional suck is identified by “abnormal movements of the tongue and jaw”.17 the administration and scoring of the nomas® is taught during a three-day course. participants are required to observe infants at bedside in the neonatal intensive care or special care nursery during the first two minutes of a routine bottle feeding in order to accurately diagnose their suck pattern. a two-minute sample was selected to observe the best performance of the infant, since younger infants are not often able to sustain the suck well. participants are required to pass an inter-rater reliability standard, in order to use the nomas® as an assessment tool after completing the course. method clinical observations of sucking patterns in infants from 31 to 44 weeks pca were undertaken. the purpose was to determine whether or not there is a correlation between developmental maturation and sucking ability, based upon the nomas®. only those infants who were diagnosed with a disorganized suck on the nomas® were observed. infants with a normal suck (i.e., no difficulty with the coordination of suck/swallow/breathe) or those infants with a dysfunctional suck (abnormal movement of the jaw and tongue during sucking28) were excluded. the subjects included one hundred and twenty (120) infants from the intensive care and special care nurseries. gestational and post conceptional ages for the infants were recorded. infants ranged in age from 31 to 44 weeks pca. the first two minutes of nutritive sucking on a bottle at bedside were recorded on videotape during a routine nursery feeding of each subject. infants were evaluated on the nomas® while being fed by staff nurses in either a level ii or level iii intensive care or special care nursery. nursing and physician agreement with respect to the infant’s readiness to begin nipple feeding, was required. the nipple used for the feeding had been pre-selected by nursing staff for each infant prior to the bedside observation. all subjects were videotaped once at bedside during a three-day nomas® certification course conducted in nurseries located in the united states, canada, asia, and europe. a two-minute videotape of the mouth during nutritive sucking was taken using a panasonic palmcorder, pv-d407, after signed parental consent was obtained. in some cases the parent was available to feed the infant during the observation. the videotape was part of the course and as such was not considered to be a study at the time of the videotaping. all infants observed were medically stable and had a physician’s order to proceed with bottle feeding. because these infants were only observed as part of the 3-day nomas® certification course observers were not privy to detailed medical information. the number of infants in each group included: 31-31 6/7 weeks pca = 2 32-32 6/7 weeks pca = 3 33-33 6/7 weeks pca = 6 34-34 6/7 weeks pca = 11 35-35 6/7 weeks pca = 18 36-36 6/7 weeks pca = 30 37-37 6/7 weeks pca = 11 38-38 6/7 weeks pca = 11 39-39 6/7 weeks pca = 10 40-40 6/7 weeks pca = 6 41+ weeks pca = 12 each videotape was reviewed and the number of sucks that occurred during the two-minute sample was counted. isolated sucks (i.e., one or two sucks occurring alone) were subtracted in order to obtain the total number of sucks contained within sucking bursts during the two minutes. based upon the average developmental observer • 2015 • 13 number of sucks and the range of sucks per two-minute nutritive sucking sample, a developmental correlation was outlined. since all infants were videotaped during a nomas® certification course, a minimum of at least four examiners evaluated each infant at bedside and inter-rater reliability for the diagnosis of the disorganized suck was established. three of these examiners were course participants and one examiner was the nomas® course instructor. scoring of the suck pattern was done after the two-minute observation was completed followed by a discussion of the results. findings the percentage of sucks contained within nutritive sucking bursts increased with maturation (table 1, page 15 ). this is in agreement with the findings of gewolb, bu’lock, grybowski and others.5,12,13,29-31 the range of sucks contained within sucking bursts during the two-minute sample also increased with maturation (table 2, page 15). infants at 31 weeks demonstrated from zero to eight total sucks in a two-minute nutritive suck sample; infants at 32 weeks had 10-49 sucks; and infants at 33 weeks had 23-59 sucks. infants at 34 weeks demonstrated a range of 14-79 sucks in the two minutes. by 35 weeks pca infants demonstrated as many as 127 sucks during the two minute nutritive sucking sample. at 36-36 6/7 weeks of age the maximum number of sucks in the first two minutes of nutritive sucking from a bottle was 123 and at 37-37 6/7 weeks was 145. the average number of sucks in the two-minute nutritive suck sample nearly doubled from 34 to 35 weeks pca and more than doubled by 37 weeks pca (table 3 page 15). the average number of sucks contained within sucking bursts, the range of sucks and the maximum number of sucks in a two-minute sample of nutritive sucking increased with maturation and can be seen as a developmental continuum of sucking. discussion in many nurseries both in the united states and in other countries oral feeding is usually not introduced to premature infants who are younger than approximately 34 weeks pca. this explains the small sample size of infants available for review at 31 and 32 weeks pca. when isolated sucks are observed, or when the infant stops sucking to breathe during the first two minutes of a nutritive suck sample, it was found not only to be a clinical symptom of a disorganized suck, but one more typically found in younger premature infants. although the average nutritive suck is described as having one suck per second, some younger or sicker term infants may have a faster suck rate or sucks that are not accompanied by swallows and may demonstrate more than 120 sucks during a two-minute sample; while other full term infants may have a 3:1 suck/swallow ratio and also demonstrate more sucks than one per second. additional research is needed in order to evaluate the impact of illness, medical diagnosis and respiratory difficulty on neonatal sucking and the nomas® results during the first two minutes of the nutritive suck. based upon the literature it seems reasonable to suspect that the younger, sicker infants will have more difficulty with the coordination of suck/swallow/breathe, than the older healthier ones. this clinical observation of reflexive neonatal sucking over time with increasing pca, based on the nomas®, does show improved coordination of suck/swallow/breathe with maturation and correlates with other studies.3,5,6,9,12,13,15,16,22 these findings are worth noting from a developmental perspective because they support the infant’s readiness to feed at 35 weeks pca and later, but not earlier, and correlate well with much of the literature. conclusion this clinical observation demonstrates trends in sucking activity and changes in sucking performance with maturation both of which are identifiable by the nomas®. evaluation of infant sucking, based upon the nomas®, agrees with previous reports that the development of nutritive sucking in the preterm infant is dependent upon maturation and neurodevelopment, rather than on learned behavior.5,6 as the infants matured they demonstrated a larger number of total sucks in a two-minute nutritive sample, a better ability to sustain the suck for two minutes, and a greater percentage of sucks contained within sucking bursts as indicated by the scores on the nomas®. these findings correlate with other studies that have documented the changes in nutritive suck patterns that occur in preterm infants over time.30, 31 the nomas® is an important feeding observational assessment as it evaluates the early nutritive suck of the preterm and term infant in the intensive care/special care nursery. it allows for clinical observation at the bedside and has established inter-rater reliability among examiners both at bedside and on videotape. in addition, the administration and scoring of the nomas® requires only two minutes and may be used as an effective screening tool for those infants who have just begun to feed orally. at this time it is unclear just how much can be predicted by the early evaluation of neonatal sucking, although a significant association has been reported between neonatal sucking patterns at 40 weeks post-menstrual age and developmental outcome at both 12 and 18 months corrected gestational age.32 it has been suggested that a standardized instrument for neonatal sucking evaluation may offer a cost-effective early screening strategy for preterm infants who are at greatest risk for developmental delay.33 since the nomas® is widely used in clinical and research environments and can be administered in just two minutes, it has been suggested that it serve as such an evaluation.20,21,23,24,34,35 further studies are needed, however, in the areas of feeding progress and improvement in sucking skills of preterm and term infants in intensive care and in the area of developmental follow-up as it correlates with neonatal sucking performance on the nomas®. of particular interest are the infants who demonstrate clinical signs of stress during nutritive sucking on the nomas® since those infants may be more likely to develop a sensory-based feeding aversion later. another area of interest is the sensory aspect of neonatal sucking and the infants who demonstrate deviations in their sensory response to nipple feeding. sensory deviations such as perseveration, habituation, and poor adaptability are identified by the nomas® during the two-minute evaluation. it would be interesting to explore the possibility of the prediction of later sensory integration disorders, 14 • 2015 • developmental observer jaw normal disorganization dysfunction ___ consistent degree of jaw depression ___ rhythmical excursions ___ spontaneous jaw excursions occur upon tactile presentation of the nipple up to 30 minutes prior to a feed ___ jaw movement occurs at the rate of approximately one per second (1/2 the rate of nns) ___ sufficient closure on the nipple during the expression phase to express fluid from the nipple ___ inconsistent degree of jaw depression ___ arrhythmical jaw movements ___ difficulty initiating movements: __ inability to latch on __ small, tremor-like start-up movements noted __ does not respond to initial cue of nipple until jiggled ___ persistence of immature suck pattern beyond appropriate age __ under 40 weeks pc (transitional suck) ___ excessively wide excursions that interrupt the intra-oral seal on the nipple ___ minimal excursions; clenching ___ asymmetry; lateral jaw deviation ___ absence of movement (% of time) ___ lack of rate change between nns and ns (nns = 2/sec; ns = 1/sec) tongue normal disorganization dysfunction ___ cupped tongue configuration (tongue groove) maintained during sucking ___ extension-elevation-retraction movements occur in anteriorposterior direction ___ rhythmical movements ___ movements occur at the rate of one per second ___ liquid is sucked efficiently into the oro-pharynx for swalllow ___ excessive protrusion beyond labial border during extension phase of sucking without interrupting sucking rhythm ___ arrhythmical movements ___ unable to sustain suckle pattern for two minutes due to: __ habituation __ poor respiration __ fatigue ___ incoordination of suck/swallow and respiration which results in nasal flaring, head turning, extraneous movement ___ flaccid; flattened with absent tongue groove ___ retracted; humped and pulled back into oro-pharynx ___ asymmetry; lateral tongue deviation ___ excessive protrusion beyond labial border before/after nipple insertion with out/down movement ___ absence of movement (% of time) summary and impression: recommendations: nomas neonatal oral-motor assessment scale (nomas) copyright © 1990 marjorie meyer palmer ® licensed examiner license # developmental observer • 2015 • 15 table 1. percentage of total sucks contained within sucking bursts post-conceptional age (pca) 31-31 6/7 weeks 32-32 6/7 weeks 33-33 6/7 weeks 34-34 6/7 weeks 35-35 6/7 weeks 36-36 6/7 weeks 37-37 6/7 weeks 38-38 6/7 weeks 39-39 6/7 weeks 40-40 6/7 weeks 41+ 6/7 weeks 0 89% 89% 87% 98% 96% 97% 98% 99% 99% 98% table 2. developmental maturation of suck range of sucks in two-minute nutritive suck sample (minus isolated sucks) post-conceptional age (pca) 31-31 6/7 weeks 32-32 6/7 weeks 33-33 6/7 weeks 34-34 6/7 weeks 35-35 6/7 weeks 36-36 6/7 weeks 37-37 6/7 weeks 38-38 6/7 weeks 39-39 6/7 weeks 40-40 6/7 weeks 41+ 6/7 weeks 0-8 10-49 23-59 14-79 23-127 18-123 30-145 23-116 29-99 23-87 44-111 table 3. average number of sucks in two minute nutritive suck sample post-conceptional age (pca) 31-31 6/7 weeks 32-32 6/7 weeks 33-33 6/7 weeks 34-34 6/7 weeks 35-35 6/7 weeks 36-36 6/7 weeks 37-37 6/7 weeks 38-38 6/7 weeks 39-39 6/7 weeks 40-40 6/7 weeks 41+ 6/7 weeks 0 22 29 33 64 53 68 60 68 60 74 autistic spectrum disorders (asd), and pervasive developmental disorders not otherwise specified (pdd-nos) as well as sensory based feeding aversions based upon early neonatal nutritive sucking scores on the nomas®. references 1. richards sd, ritchie s, hobbs gr, mandich m, sheth rd. neonatal suck reflex pattern does not predict apnea. journal of child neurology. 1999; 14, 9: 614-616. 2. neiva fc, leone cr. development of sucking rhythm and the influence of stimulation in premature infants. pro fono. 2007; 19, 3: 241-248. 3. dodrill p, donovan t, cleghorn g, mcmahon s, davies ps. attainment of early feeding milestones in preterm neonates. journal of perinatology. 2008; 8: 549-555. 4. de castro ag, lima mde c, de aquino rr, eickmann sh. sensory oral-motor and global development of preterm infants. pro fono. 2007; 19, 1: 29-38. 5. gewolb ih, vice fl. maturational changes in the rhythms, patterning, and coordination of respiration and swallow during feeding in preterm and term infants. developmental medicine and child neurology. 2006; 48, 7: 589-599. 6. gewold ih, vice fl, et.al. developmental patterns of rhythmic suck and swallow in preterm infants. developmental medicine and child neurology 2001; 43, 1: 22-27. 7. chang yw, chang yj. the relationship between oral feeding and cardiorespiratory regulation of premature infants. hu li za zhi. 2008; 55, 3: 5-10. 8. pickler rh, best am, reyna ba, gutcher g, wetzel, pa. predictors of nutritive sucking in preterm infants. journal of perinatology. 2006; 26, 11: 693-699. 9. lau c. development of oral feeding skills in the preterm infant. archive of pediatrics. 2007; 14, 1: s35-s41. 10. bragelien r, rokke w, markestad t. stimulation of sucking and swallowing to promote oral feeding in premature infants. acta paediatrica. 2007; 96,10: 1430-1432. 11. poore m, zimmerman e, barlow sm, wang j, gu f. patterned orocutaneous therapy improves sucking and oral feeding in preterm infants. acta paediatrica. 2008; 97,7: 920-927. 12. bu’lock f, wooldridge mw, and baum jd. development of coordination of sucking, swallowing, and breathing. ultrasound study of term and preterm infants. developmental medicine and child neurology. 1990; 32, 8: 669-678. 13. grybowski j. suck and swallow in the preterm infant. pediatrics. 1969; 43: 96-102. 14. medoff-cooper b, weininger s, zukowsky k. neonatal sucking as a clinical assessment tool: preliminary findings. nursing research. abstract only. lippincott-raven publishers. 15. van der meer a, holden g, van der weel r. coordination of sucking, swallowing, and breathing in healthy newborns. journal pediatric neonatology. 2005; 2,2: nt69-nt72. 16. crook, ck. the organization and control of infant sucking. advances in child development and behavior. 1979; 14: 209-252. 17. palmer mm, crawley k, blanco ia. the neonatal oral-motor assessment scale: a reliability study. journal of perinatology. 1993. 13,1: 28-35. 18. hill a, volpe jj. disorders of sucking and swallowing in the newborn infant: clinicopathologic correlations. progress in perinatal neurology. philadelphia, pa: saunders. 1981. 19. zarem, c., kidokoro, h., et.al., psychometrics of the neonatal oral-motor assessment scale. developmental medicine and child neurology. 2013. 55, 12: 115-1120. 20. howe th, lin kc, fu cp, su ct. a review of psychometric properties of feeding assessment tools used in neonates. journal of obstetrics and gynecology and neonatal nursing. 2008; 37, 3: 338-349. 21. church pt, keller ce, gilbert, j et.al. serial neonatal oral-motor assessment scale ( nomas®) as a measure of feeding readiness. presented at the american academy of cerebral palsy and developmental medicine, boston, ma; 2006. 22. macmullen nj, dulski la. factors related to sucking ability in healthy newborns. journal of obstetrics and gynecology and neonatal nursing. 2000; 29,4: 390-396. 23. da costa sp, van der schans cp. the reliability of the neonatal oral-motor assessment scale. acta paediatrica. 2008; 97: 21-26. 24. tsai sw, chen ch, lin mc. prediction for developmental delay by neonatal oral-motor assessment scale in preterm infants without brain lesion. pediatrics international. 2009. 25. hanlon mb, tripp jh, ellis, re et.al. deglutition apnoea as indicator of maturation of suckle feeding in bottle-fed preterm infants. developmental medicine and child neurology. 1997; 39,8: 534-542. continued on page 25 16 • 2015 • developmental observer what a delightful mixture of old and new did we experience in segovia! the modern “parador” where the conference was held, is built on a hillside opposite the medieval city of segovia. it was designed so that the public areas and the guest rooms had stunning views of the walled city and the roman aqueduct. as we sat outside or inside the common areas, enjoying 21st century amenities, this panorama of ancient, medieval and modern integrated together constantly surrounded us. the 25th annual meeting of nidcap trainers and colleagues comprised 3½ days of wonderful food, incredible vistas and outings, that served as bookends to days immersed in exploring and understanding the underpinnings of the nidcap philosophy of relationship-based care along with implementation strategies. with each meeting i have attended, i appreciate more the theoretical and foundational work of dr. heidelise als and her colleagues, which now has grown into an ever more sophisticated, nuanced and expansive program, not unlike the seamless mixture of old and new that surrounded us in the city of segovia. saturday saturday morning’s introductory session included an overview of the current training efforts by 20 training sites summarized by jim helm, followed by self-introductions of over 120 participants who hailed from 20 different countries! the group photos from each of the prior 24 trainers meeting, reproduced in the conference binders, showed how this group of clinicians, researchers, supporters and family members have changed over the years. many of us were reminded of how young we were when we first started this work! and yet we again subjected ourselves to the scrutiny of future nidcapers as we posed for this year’s group photo this time with the magnificent view of segovia as the backdrop. saturday afternoon was the annual nfi membership meeting where the various committees reported from the board, and where the election for board seats whose terms were completed took place. the spanish group arranged to take us on an outing to see the medieval town of pedreza, an enchanting walled city where we had a guided tour and then enjoyed free time to explore the city under the setting sun that painted the city walls a soft golden glow. we were then driven to a restaurant in nearby torrecaballeros where we were treated to regional specialties of lamb and pork. sunday sunday morning while the nfi board of directors met, the rest of the group had the opportunity to take a walking tour within the walls of the old city of segovia and, explore the cathedral and town square, as well as get an up close and personal view of the roman aqueduct. this magnificent antiquity built in the 1st century in the common era, was in use until the mid-19th century, bringing water from mountains 17 kilometers away. as it approaches the city and crosses a valley, the structure rises to a level of 28.5 meters with 167 arches all placed without mortar! in the afternoon we were treated to our key note speakers. dr. nathalie charpak provided fascinating follow-up data on a cohort of premature infants who received kangaroo mother care as infants, and who were studied when 18-20 years old. her preliminary data suggests that the parents of these children keep their children in preschool longer and are more invested in creating a stimulating home environment. the children were less likely to drop out of school and had better productivity as measured by higher hourly wages. dr. charpak is currently looking at brain maturation in this population. dr. miguel marin gave us a comprehensive overview of the very complex neuro25th annual nidcap trainers meeting, segovia spain nurturing emotional relationships within the newborn intensive care setting view of the city of segovia and the cathedral from the “parador.” jean powlesland, rn, ms developmental observer • 2015 • 17 endocrinology of childbirth and maternal-infant attachment and how disruption of these processes may potentially effect the development of attachment and emotional issues later in life. this brought forcefully to us the need to be mindful of potential negative consequences whenever we separate infant from mother, and motivates us to consider how we can minimize those times and those negative consequences. dr. nikk conneman then led us on a reflection of compassion and empathy as we met in small groups to discuss our experiences of empathy and compassion and how this relates to being nurturing and feeling nurtured in our work. monday monday morning was dedicated to research abstract presentations. eleven abstracts and eight posters were presented, encompassing such diverse topics as a meta-analysis of nidcap research, skin to skin care, developmental outcomes and attachment in premature infants, research into the sensory experiences of the infant, looking at olfaction and audition in premature infants and the role of oxytocin in parental stress. also included were many clinical topics such as development of parental educational tools, survey of developmental care in french nicu’s, feeding infants with congenital heart disease and the use of music therapy to promote relationships in the nicu. the afternoon was devoted to a workshop to discuss how to better utilize the nidcap nursery assessment and certification program (nnacp) as part of nidcap training and consultation, as well as a reflective session on nurturing relationships between infants, families and staff in the nicu, led by our parent representatives, mandy daly, silke mader and marni panas. a 25th anniversary celebration on monday night included a birthday cake for the nfi, cut by president gretchen lawhon and former president and founder heidelise als, followed by music, dancing and singing late into the evening. tuesday tuesday morning included a presentation from the british and dutch groups on their work on developing a standardized introductory education course for those seeking a basic educational course that is compatible with nidcap philosophy. rodd hedlund then gave a presentation on how to use the nnacp scoring process and graphics program. the phoenix group then wrapped up with a short presentation on the 26th annual nidcap trainers meeting, with the infamous elk ceremony closing out the conference. many veteran participants of this meeting commented on how wonderful it was to have so much more free time in order to network and talk casually among colleagues. as we wandered around segovia and pedraza, or sat on the parador’s patio with a glass of sangria, you could hear many conversations, in a number of languages, concerning research and clinical work among people who only see each other at this annual event. the less packed conference schedule was emotionally nurturing to all the participants and helped us to be more engaged in the topic of emotional nurturance! segovia was a wonderful setting for our meeting, both literally and figuratively. while we enjoyed a relaxing and supportive time together, segovia’s blend of modern and ancient reminded us that as our organization grows there are challenges in the transformation from a small, cohesive network of colleagues, to a large international organization that covers a great diversity of systems and issues. with that growth there are bound to be challenges and differences in vision, but hopefully we will continue to blend the best of the old with the most promising of the new to meet diverse needs and forge a stronger organization. in the town square in segovia, i photographed the statue of antonio machado, a spanish writer and poet who lived and wrote in segovia. one of his poems contains these stanzas: caminante, son tus huellas el camino, y nada más; caminante, no hay camino, se hace camino al andar. al andar se hace camino, y al volver la vista atrás se ve la senda que nunca se ha de volver a pisar. caminante, no hay camino, sino estelas en la mar. wanderer, your footsteps are the road, and nothing more; wanderer, there is no road, the road is made by walking. by walking one makes the road, and upon glancing behind one sees the path that never will be trod again. wanderer, there is no road only wakes upon the sea. how often do those of us who champion developmental care in our units feel that we are blazing the trail and breaking the path? for machado, no one leaves a true path for another to follow; each person follows their own path, which like the wake on the water, will eventually disappear. however, the wake spreads far and wide and gently touches many before it finally dissipates. many of us come to this meeting emotionally, intellectually and often physically drained from the rigors of being trailblazers in our nicu practice. the emotional nurturance that was our theme of our conference is also a critical part of why we gather each year. we need this annual gathering as a chance to validate for each other what we are doing, to be inspired and renewed in our understanding of the importance of this work. the two spanish centers, led by dr. maria lopez maestro from madrid and dr. josep perapoch from barcelona, provided us with a nurturing, relaxed and fun atmosphere in order to learn and be renewed. refreshed, we returned to our home units to work with an energy that creates gentle wakes that will continue to radiate out and impact the lives of all those we work with and care for in the nicu. see you in phoenix, october 17-20, 2015! the statue of antonio machado in the town square of segovia. 18 • 2015 • developmental observer newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery assessment and certification program (nnacp) the nidcap nursery assessment and certification program (nnacp) provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. external review and validation by the nfi may be sought when a nursery feels it has achieved this goal. successful nidcap nursery certification, the ultimate goal, denotes distinction in the provision of a consistently high level of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment. nurseries that have achieved this recognition serve as a model and an inspiration to others. for information on eligibility requirements and the certification process please see: www.nidcap.org; and/or contact rodd hedlund, med, nncp director at: nnacpdirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve mission the nfi’s mission is to promote the advancement of the philosophy and science of nidcap care and to assure the quality of nidcap education, training and certification for professionals and hospital systems. adopted by the nfi board, may 1, 2015 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care and assessment in the evidence based nidcap model, which supports development, minimizes stress, is individualized and uses a relationship-based, family-integrated approach. adopted by the nfi board, may 1, 2015 developmental observer • 2015 • 19 d e v e l o p m e n ta l r e s e a r c h dalia silberstein, rn, phd family centered multidisciplinary rounds in the nicu: do they make a difference? background multidisciplinary and family-centeredness are important and necessary elements of current, updated newborn care.1-3 fundamental to these two elements of care are collaboration and information sharing, which rest upon the establishment of effective, open and sensitive communication between caregivers and families on an ongoing basis.4,5 communication and information sharing have been underlined as critical needs of families in newborn intensive care.6,7,8 yet, and in spite of the significant shift that has taken place in many nicus towards a family-oriented model of care, parents’ communication needs are not always successfully met by the professional team. parents might remain dissatisfied with their involvement in care, physician-parent communication, and availability of information.9 it is therefore widely accepted that strategies conducive to improve teamwork and communication among caregivers, including parent-staff communication, are still very much needed in the nicu.3,10 however, the establishment of stable structures of communication is a common challenge within complex organizational systems such as the nicu, where communication at multiple levels and in multiple directions is essential for the delivery of effective and quality care.1 in order to put in place practices that promote communication and foster the values of multidisciplinary and family-centeredness on an ongoing basis, a proactive effort that involves planning and purpose from caregivers is usually needed.11 family centered rounds (fcrs) have been suggested as an organizational strategy that holds potential to improve communication and collaboration between families and staff.12,13 fcrs are defined as “interdisciplinary work rounds at the bedside in which patient and family share in the control of the management plan, as well as in the evaluation of the process itself ”.11 this general conceptual framework has been more specifically articulated in different clinical frameworks. mittal12 defines fcrs in the pediatric setting as multidisciplinary rounds that involve complete case discussion and presentation in front of the patient and family, so as to involve them in the decision-making. about a decade ago, the american academy of pediatrics advocated for bedside rounds with the family present as the standard of care.14 nevertheless, evidence on implementation of fcrs in pediatric contexts is limited and mostly not specific to the nicu setting. moreover, most of the evidence pertains to observational studies or quasi-experimental study designs, and controlled studies are very scarce. evidence on fcrs in a recent prospective study comparing families with a child admitted to a general pediatric ward team with or without formal training in fcrs, families who experienced fcrs were more likely to report consistent medical information, the option of discussing the care plan, participation in decision-making, physicians listening carefully to their concerns, and showing respect for them. no difference was found in number of medications, discharge time and hospital charges. the authors concluded that fcrs were associated with higher parent satisfaction with no additional burden to health service use, and emphasized the need to assess this rounding modality in different settings of care.15 a multidisciplinary improvement team in a pediatric acute care unit published a case report on a process that allowed families to decide whether they want to be part of attendingphysician rounds.16 this team concluded that family involvement in rounds seemed to improve communication and shared decision-making, as well as to offer a new learning framework for residents and students. a quasi-experimental study to determine the impact of family-centered multidisciplinary rounds on an inpatient the infant’s mother and nursery caregivers sharing observations with one another. 20 • 2015 • developmental observer pediatric ward, reported no differences in family satisfaction between conventional rounds and fcrs. nevertheless, a positive effect was found for the staff, who reported better understanding of the patients’ medical plans, better ability to help families, and a greater sense of teamwork with fcrs as compared to conventional rounds. the authors attributed the lack of effect on parent satisfaction to the small sample size, and underscored the positive impact on staff satisfaction as the most significant finding in their study.17 the intervention study conducted by voos and colleagues18 is among the very few published on the implementation of family-centered rounds specifically in the nicu setting. this team assessed the impact of fcrs both on staff satisfaction and on parent satisfaction and stress. an increase in a compound measure of collaboration and satisfaction was reported by newborn nurse practitioners and medical fellows following fcrs implementation, while no other professional group reported a decrease in satisfaction. although parents’ overall satisfaction scores did not change following implementation of fcrs, items related to communication (meeting with physicians and obtaining information about their infant condition and long term expectations) did show a significant increase. parental stress scores did not vary following implementation of fcrs. one of the main limitations of this study was the low return rate of parents’ questionnaires. the views of parents and health-care providers regarding parental presence at bedside rounds in the nicu has been recently explored in a canadian study,19 which surveyed nurses, residents and senior medical students. the majority of parents reported that attending rounds reduced their anxiety (84%) and increased their confidence in the health-care team (88%). a small minority (8%) found the discussion during rounds was more confusing than helpful, and some (17%) thought too many medical terms were used. nurses were more likely than medical trainees to support parental presence at rounds, and felt that parent presence results in less time being spent outside rounds explaining the child’s condition and plan of care. yet, about three-quarters of medical trainees and nurses thought discussion is inhibited, and two-thirds of trainees felt there is less teaching when parents attend rounds. in a quality improvement project conducted in our nicu in israel,20 nurses’ perceptions were more positive after implementation of fcrs, specifically regarding the parents’ right to participate in rounds, the contribution of fcrs to parents’ understanding of the infant’s condition and plan of care, and the contribution to nurses’ understanding of infant and parents’ needs. parents, in turn, felt better understood and perceived that their opinion was further taken into account, after implementation of fcrs. overall, a range of benefits from involving families during fcrs have been reported in the last decade and include improved parental satisfaction, staff satisfaction, communication, coordination of care, teamwork, discharge planning, and improved trainee education.16,17,21-26 despite this growing body of literature and the fact that the vast majority of families will prefer to be present on rounds when given the choice,16,27 a more thorough scrutiny, implementation and evaluation of this important component of family-centered care is apparently needed, most specially in the nicu setting. challenges to fcrs several concerns have been raised regarding family-centered multidisciplinary rounds and their feasibility in clinical contexts.11,12,28,29 time investment emerges as one of the main concerns raised by professionals in different settings, and is definitely relevant to the complex, often unpredictable nature of the work at a nicu. even when the culture of care in a unit resonates with principles of multidisciplinary and family centeredness, genuine concerns about the extra time required for a new rounding modality are often expressed by the staff. the time commitment for family-centered multidisciplinary rounds and conventional rounds was examined in a short term quasiexperimental study conducted in an inpatient pediatric ward. the average time for discussing each patient was 10.2 and 7.5 minutes, respectively. although the rounding period during fcrs took longer, the difference was not found to be statistically or clinically significant.17 in a case report from an acute pediatric care setting, it was found that fcrs took approximately 20% longer than traditional rounds.16 participating staff, however, believed that their time was used more efficiently and that the new rounding modality saved time later in the day. of great significance was the improvement in discharge timelines as a result of fcrs implementation. in line with this findings, most practitioners in an adult cardiothoracic setting found that even if the new rounding modality may require an additional investment of time up front, it saved time during the course of the day.30 in the nicu, both nurses and medical trainees thought that rounds take longer when parents are present, yet only less than one-third of them perceived that as an actual problem.19 overall, it appears that the evidence about time allotted for rounds is not conclusive, and there are also reports that parental participation was not associated with an increase in time in the pediatric setting.29, 31 another concern relates to the belief that fcrs could be intimidating or overwhelming for families.11,12,32 this is not clearly supported in the literature, and different studies have actually shown families’ explicit wish to participate in rounds.27,33 in a randomized controlled trial of bedside versus conference room presentation in a pediatric intensive care unit, parents’ satisfaction was significantly higher during bedside case presentations, they preferred this modality of patient presentation, and were more comfortable attending bedside teaching. when asked for their preference for next case presentations, most parents desired that it be performed at the bedside.34 in a survey of community-based clinic patients following bedside presentations and discussions, the group reported that listening to their concerns being discussed with another physician made them more comfortable, and they also demonstrated a preference for listening to interactions in future visits.35 responses from preterm infant parents are in line with these findings. a study about parent-staff communication in the nicu addressed parents’ desire to be present during rounds.8 moreover, experiencing fcrs helped parents to feel less worried about their infant,19 and parental stress did not increase.18,36 certainly, the provision of a relaxed and sensitive atmosphere, as well as the use of clear and simple lay terminology to explain complex medical concepts, are among the various factors that shape parents’ satisfaction and comfort during fcrs.16,22,37 developmental observer • 2015 • 21 concerns have also been raised about staff discomfort with bedside discussions when parents are present, as well as the possibility that rounds with families might constrain bedside teaching.21,38 however, higher satisfaction has been reported by staff members (including attending physicians, residents, nurses and medical students) when rounds were held with the family, both in pediatric17 and in newborn18 settings. moreover, residents-intraining reported to be equally comfortable with presenting the clinical case and satisfied with the teaching received, when clinical presentations were held with families at the bedside.34 in line with this finding, medical residents tend to believe that teaching is better when families are present and that learning occurs in a way that is not possible when rounds are held in the conference room.16 while presumably not all teaching activities can occur when families are present in rounds, educational benefits unique to fcrs include learning through increased patient encounters, attending role modeling, and direct observation and feedback.25 privacy and confidentiality are other concerns, especially in multiple-bed room units,28,39 where private rooms, that are becoming increasingly common in nicus worldwide,40 cannot be afforded. sensitivity and flexibility towards parents’ desires, as well as an open discussion of the unit’s limitations concerning privacy, seem to be key in overcoming environmental constraints. when aware of these limitations, families can explicitly express their own choices regarding the participation in fcrs. positive experiences with family-centered rounds have, in fact, been reported in newborn intensive care units with multiple-bed rooms.18 finally, the concomitant presence of several caregivers at the bedside can be an additional challenge of fcrs in the nicu. beyond the need to maintain a quiet environment during rounds, the provision of multidisciplinary viewpoints within the time constraints imposed by a realistic and feasible clinical round at the bedside, can be a challenge in itself. this challenge has not received much attention in the literature, yet from our experience with the implementation of fcrs in our unit, we learned that periodic debriefing of rounds are important in order to facilitate the participation of all disciplines involved. especially important is to assure the availability of the bedside nurse during fcrs,41 an issue that has to be carefully and proactively addressed, especially in settings where the work load of bedside nurses is high. conclusions family-centered rounds emerge as a key component of familycentered care. there is now growing evidence on the inclusion of parents as active participants in bedside rounds in the pediatric setting,12,13 and this practice has been recommended by important professional organizations.14 most recently, a couple of studies have focused on fcrs in the nicu.18,19 review of the evidence provides preliminary support for various benefits of this rounding modality both for families and staff. by potentially providing a consistent venue for family engagement, fcrs arise as a promising framework to further foster communication and collaboration between parents and caregivers in the nicu. since there are many different ways to conduct fcrs, each unit should determine how to best incorporate it and tailor it to its own clinical setting. several studies have provided recommendations on how to more optimally conduct fcrs, and offer valuable insights about the factors that hinder and facilitate their implementation.16,22,37,42 finally, it should be noted that fcrs are to be articulated as an additional and complementary structure of communication between parents and staff, and not perceived as a “stand alone” practice. to fully exert their potentially positive influence on different aspects of infant and family caregiving, fcrs should be embedded in a nicu’s comprehensive family-centered culture of care.3,23 references 1. brown ms, ohlinger j, rusk c, delmore p, ittmann p. implementing potentially better practices for multidisciplinary team building: creating a neonatal intensive care unit culture of collaboration. pediatrics. 2003;111: e482-e488. 2. griffin, t. family-centered care in the nicu. journal of perinatal neonatal and nursing. 2006; 20: 98–102. 3. gooding j s, cooper lg, blaine ai, et al. family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. seminars in perinatology. 2011; 35(1): 20–28. 4. institute for family-centered care. advancing the practice of patientand family-centered care: how to get started. available from http://www.familycenteredcare.org 5. rao jk, anderson la, inui ts, frankel rm. communication interventions make a difference in conversations between physicians and patients: a systematic review of the evidence. medical care. 2007;45: 340-349. 6. perlman nb, freedman jl, abramovitch r, et al. informational needs of parents of sick neonates. pediatrics. 1991; 88:512–518. 7. de rouck s, leys m. information needs of parents of children admitted to a neonatal intensive care unit: a review of the literature (1990–2008). patient education and counseling. 2009; 76(2): 159–173. 8. wigert h, dellenmark mb, bry k. strengths and weaknesses of parent–staff communication in the nicu: a survey assessment. bmc pediatrics 2013;13:71. 9. berns sd, boyle md, popper b, et al. results of the premature birth national need-gap study. journal of perinatology. 2007; 27:s38-s44. 10. saunders rp, abraham mr, crosby mj, thomas k, edwards wh. evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units. pediatrics. 2003; 111 e437-e449. 11. sisterhen ll, blaszak rt, woods mb, smith ce. defining family-centered rounds. teaching and learning in medicine. 2007; 19(3): 319-322. 12. mittal, v. family-centered rounds. pediatric clinics in north america. 2014; 61: 663–670. 13. harris, gm. family-centered rounds in the neonatal intensive care unit. nursing for women’s health. 2014; 18: 19-27. 14. american academy of pediatrics. family-centered care and the pediatrician’s role. pediatrics. 2003; 112: 691–696. 15. kuo dz, sisterhen ll, sigrest te, et al. family experiences and pediatric health services use associated with family-centered rounds. pediatrics 2012; 130(2):299-305. 16. muething se, kotagal ur, schoettker pj, gonzalez del rey j, dewitt tg. familycentered bedside rounds: a new approach to patient care and teaching. pediatrics 2007;119(4):829-832. 17. rosen p, stenger e, bochkoris m, hannon mj, kwoh ck. family-centered multidisciplinary rounds enhance the team approach in pediatrics. pediatrics 2009; 123(4):e603-e608. 18. voos kc, ross g, ward mj, et al. effects of implementing family-centered rounds (fcrs) in a neonatal intensive care unit (nicu). the journal of maternal-fetal and neonatal medicine 2011;24(11):1403–1406. 19. grzyb mj, coo h, ruhland l, dow k. views of parents and health-care providers regarding parental presence at bedside rounds in a neonatal intensive care unit. journal of perinatology 2014;34:143–148 20. silberstein d, bauer-rusek s, koren i, shbeta k, litmanowitz i. enhancing a culture of collaboration: implementation of family-centered interdisciplinary rounds in the nicu. abstract presented at the 24th nidcap trainers meeting, winston-salem, north carolina, 2013. 21. rappaport di, ketterer ta, nilforoshan v, et al. family-centered rounds: views of families, nurses, trainees, and attending physicians. clin pediatr 2012;51(3):260–6. 22. latta lc, dick r, parry c, et al. parental responses to involvement in rounds on a pediatric inpatient unit at a teaching hospital: a qualitative study. acad med 2008; 83(3):292–7. 23. johnston am, bullock je, graham je, et al. implementation and case-study results of potentially better practices for family-centered care: the family-centered care map. pediatrics 2006;118:s108-114. 24. mittal v, sigrest t, ottolini m, et al. family-centered rounds on pediatric wards: a pris network survey of us and canadian hospitalists. pediatrics 2010;126:37–43. 25. mittal v, krieger e, lee b, et al. pediatric residents’ perspectives on family centered rounds a qualitative study at 2 children’s hospitals. j grad med educ 2013;5:81–7. 26. ingram tc, kamat p, coopersmith cm, vats a. intensivist perceptions of family-centered rounds and its impact on physician comfort, staff involvement, teaching, and efficiency. journal of critical care 2014;29: 915–918. 27. davidson je. family presence on rounds in neonatal, pediatric, and adult intensive care units. ann am thorac soc 2013;10(2):152–156. references on page 25 22 • 2015 • developmental observer d e v e l o p m e n ta l r e s o u r c e s joke wielenga, rn, phd publications alvarez-garcia a, fornieles-deu a, costas-moragas c, botet-mussons f. maturational changes associated with neonatal stress in preterm infants hospitalised in the nicu. journal of reproductive & infant psychology. 2014;32(4):12-22. burke l, morad aw. family-centered cesarean birth offers appropriate thermoregulation in term neonates. journal of obstetric, gynecologic & neonatal nursing. 2014; 43(supp 1): s36-7. chen cm, lin kh, su hy, lin mh, hsu cl. improving the provision of nesting and positioning for premature infants by nurses in neonatal intensive care units (chinese). journal of nursing. 2014; 61:supplement:s41-9. conti i. favoring the parent-child relationship in neonatal intensive care. (french) soins pediatr pueric. 2014;(278):20-1. czarnecki ml, hainsworth k, simpson pm, arca mj, uhing mr, varadarajan j, et al. is there an alternative to continuous opioid infusion for neonatal pain control? a preliminary report of parent/ nurse-controlled analgesia in the neonatal intensive care unit. paediatric anaesthesia. 2014; 24(4): 377-85. davidson je, savidan ka, barker n, ekno m, warmuth d, degen-de cort a. using evidence to overcome obstacles to family presence. critical care nursing quarterly. 2014; 37(4): 407-21. evans t, whittingham k, sanders m, colditz p, boyd rn. are parenting interventions effective in improving the relationship between mothers and their preterm infants? infant behavior and development. 2014; 37(2): 131-54. flacking r, dykes f. creating a positive place and space in nicus. practicing midwife. 2014; 17(7): 18-20. gepilano d. barriers to implementation of skin-to-skin care. journal of obstetric, gynecologic & neonatal nursing. 2014;43 (supp 1):s74. gibbins s, stevens bj, yamada j, dionne k, campbell-yeo m, lee g, et al. validation of the premature infant pain profilerevised (pipp-r). early human development. 2014; 90(4): 189-93. head lm. the effect of kangaroo care on neurodevelopmental outcomes in preterm infants. journal of perinatal & neonatal nursing. 2014; 28(4): 290-9. kläusler-troxler m, kurth e, spirig r. young first-time parents’ experiences with family-centred postpartal health care in switzerland (german). pflege. 2014; 27(4): 219-30. langer c, broghammer n, poets cf. introduction of development promoting nursing according to nidcap (german). kinderkrankenschwester 2014; 33(4): 132-7. lee la, carter m, stevenson sb, harrison ha. improving family-centered care practices in the nicu. neonatal network. 2014; 33(3): 125-32. levin a, chalmers b. family-centered neonatal intensive care; birth: issues in perinatal care. 2014; 41(3): 300. lin hc, lang lc, li tc, chen ch, bachman j, peng nh. relationship between energy expenditure and stress behaviors of preterm infants in the neonatal intensive care unit. journal for specialists in pediatric nursing. 2014; 19(4): 331-8. luberto cm, bogenschutz l, cotton s. association between integrative care therapies and physiological and therapistreported pain and presentation outcomes among hospitalized neonates. journal of alternative & complementary medicine. 2014; 20(5): a18-9. lundqvist p, kleberg a, edberg a-k, larsson ba, hellstrom-westas l, norman e. development and psychometric properties of the swedish alps-neo pain and stress assessment scale for newborn infants. acta paediatrica. 2014; 03(8): 833-9. lyngstad lt, tandberg bs, storm h, ekeberg bl, moen a. does skin-to-skin contact reduce stress during diaper change in preterm infants? early human development. 2014; 90(4): 169-72. mahgoub l, van manen m, byrne p, tyebkhan jm. policy change for infants born at the “cusp of viability’’: a canadian nicu. pediatrics. 2014;134(5):e1405-10. montirosso r, fedeli c, del prete a, calciolari g, borgatti r, neo-acqua study group. maternal stress and depressive symptoms associated with quality of developmental care in 25 italian neonatal intensive care units: a cross sectional observational study. international journal of nursing studies. 2014; 51(7): 994-1002. nimbalkar sm, patel vk, patel dv, nimbalkar as, sethi a, phatak a. effect of early skin-to-skin contact following normal delivery on incidence of hypothermia in neonates more than 1800 g: randomized control trial. journal of perinatology. 2014; 34(5): 364-8. pölkki t, korhonen a. the effectiveness of music on pain among preterm infants in the nicu: a systematic review. database of systematic reviews & implementation report. 2014;12 (4):354-73. prehn j, mcewen i, jeffries l, jones m, daniels t, goshorn e, marx c. decreasing sound and vibration during ground transport of infants with very low birth weight. journal of perinatology. 2015;feb; 35(2): 110-4. epub 2014 nov 27. sherriff n, panton c, hall v. a new model of father support to promote breastfeeding. community practice. 2014; 87(5): 20-4. stevens j, schmied v, burns e, dahlen, h. immediate or early skin-to-skin contact after a caesarean section: a review of the literature. maternal & child nutrition. 2014; 10(4): 456-73. stoltz r, byrd r, hench aj, slone t, brockopp d, moe k. does the type of developmental observer • 2015 • 23 sleep surface influence infant wellbeing in the nicu? the american journal of maternal child nursing. 2014; 39(6): 363-8. sundin c, mazac l. a mother-centered approach to skin-to-skin in the operating room. journal of obstetric, gynecologic & neonatal nursing. 2014;43(supp 1): s14-5. visscher mo, lacina l, casper t, dixon m, harmeyer j, haberman b, alberts j, simakajornboon n. conformational positioning improves sleep in premature infants with feeding difficulties. journal of pediatrics. 2015; 166(1): 44-8, epub 2014 oct 12. voos, kc, park n. implementing an open unit policy in a neonatal intensive care unit. journal of perinatal & neonatal nursing. 2014; 28(4): 313-8. westrup b. family-centered developmentally supportive care. neoreviews. 2014;15; e325. books j. sizun, c. casper, b guillois, p. kuhn, g. thiriez (eds). soins de développement en période néonatale: de la recherche à la pratique paris. springer, 2014. noriko moriguchi, japan association of research on developmental care. standard developmental care for neonates. japan, july 2014. conferences nidcap: developmental care for nicu infants and families from admission through discharge location: raleigh, north carolina date: august 3, 2015 www.nidcap.org the fragile infant feeding institute 2015 location: sheraton denver west hotel, just outside of denver, colorado date: august 24 – 28, 2015 www.fragileinfantfeedinginstitute.com and www.fragileinfantfeedinginstitute.org 1st congress of joint european neonatal societies (jens) location: budapest date: september 16-20 2015 www.jens2015.eu the 9th international conference on brain monitoring and neuroprotection in the newborn. location: cork, ireland date: october 1-3, 2015 www.newbornbrain2015.com 2015 preemie parent alliance summit innovation & sustainability: future trends for fragile families location: dallas, texas, usa date: october 19 -21, 2015 national association of neonatal nurses: 31st annual educational conference location: dallas, tx, usa date: october 22-25, 2015 www.nann.org/education/content/ conference.html for complete conference listing please visit: www.nidcap.org websites and downloads www.preemievoicesbook.com www.redesignhealthcare.org/2014/11/18/ the-garfield-innovation-center/ associate editor for science we are pleased to announce that jeffrey r. alberts, phd, professor of psychological and brain sciences at indiana university, has joined the editorial board of the developmental observer. his research program has long emphasized perinatal development and parental behavior of rodents. through a grant from the u.s.’s national institutes of health, he received nidcap training from linda lacina, msn at the nidcap training and research center at cincinnati children’s, cincinnati children’s hospital medical center, cincinnati, ohio, usa, where he now pursues research in the nicu, currently on sleep promotion, feeding, skin to skin contact, and the motherinfant microbiome, all of which connect with his laboratory (animal) research. jeff’s research with pregnant rats launched into orbital spaceflight by nasa has yet to connect directly with nidcap. he joined the nfi board in 2011 and has been working mainly in areas of advancement, governance, fund raising, and the establishment of scientific support of nidcap activities. he values diversity on the board and enjoys the challenges of nfi unity across different medical and social settings. welcome jeff! we are looking forward to working with you as you share your vast scientific knowledge and experience with us, while we continue to advocate for the science-based nidcap approach to caring for infants and their families. developmentally yours, the editorial board, developmental observer we invite you to send in information that you may encounter, such as upcoming conferences, websites, books, journals, articles, videos, etc., that may be shared with our readers. please send items for inclusion in the developmental observer to joke wielenga, rn, phd at: developmentalobserver@nidcap.org. http://nidcap.org/en/programs-and-certifications/nidcap-education/one-day-conferences/ http://nidcap.org/en/nfi-news/conferences/ 24 • 2015 • developmental observer on the 1st of january 2014, more than halfway through my pregnancy, i entered the hospital due to premature rupture of my membranes. luckily, we were able to delay delivery until the 23rd of january, when at 30 weeks and 4 days, nicolò leon decided it was time to come into the world. he weighed 1420 grams and was admitted to the nicu. nicolò was a tiny little boy full of energy and he did well, for the first four days of life. then, this tale turned into a nightmare, necrotizing enterocolitis (nec), a very severe sepsis which required the surgeons to operate. from that moment, the onslaught of signing forms started, and the sorrow of repeating the same words: “yes, we understand that it is difficult for him to survive… yes, we understand that he could die... yes! for god’s sake....we understand!” nicolò had such a will to survive. he endured disease, infection, more complications including sepsis, dic, renal and heart failure...all this during his first 7 days of life. he survived all of this. he was who he was…the expression of our love…and the work, dedication, efforts and the “experiments” of all the nicu family together. leon bounced back again and again. then, rop grade iv was diagnosed and surgery was needed. nevertheless, leon lived on…it would be okay. the nurses naturally took good care of the babies. it was amazing how they are able to help parents understand how their babies are doing. it’s sort of a mixer, where diseases and therapies are served as fruit on a dish, and all of a sudden, everything is in the mixer and soon everything is mixed up. we must keep up the pace, we must understand it, because in a while it could be okay or it could not be. we had to be strong. we always thoroughly trusted all the nicu staff taking care of nicky and the staff was therapeutic for us, as well. the respectful nature of each caregiver was so clearly genuine that we felt at home, throughout the 109 days that nicky was living in the nursery. we felt protected, helped and supported, and we shared some nice moments, full of smiles, talking and drinking a lot of coffee together. we felt honoured with our best gift, our son, nicolò leon gargano. if on the 23rd of january, we were totally unaware of the existence of the nicu, by the 12th of may, when nicolò leon was discharged, we were experts on monitors, therapies, blood samples, staff shifts, the nurses’ favorite foods and the names of their children. our son is the son of all the people who took care of him… spending hours and hours around his crib: “all those people who knew that he may die…they strenuously fought to save his life. all those people who experienced fear and joy…who tried everything possible to stave off death. all those people who proudly emphasized all of nicky’s successes.” the modena nicu is a family to us, we felt like a family and we want to tell this to everybody. nicolò is the son of all the nicu people, as well. i proudly say this. also the two of us, as parents, are a part of the nursery, because the nicu is always a parent, proud to be part of the team, whatever the result. our son: nicolò leon gargano marcella, giovanni e cecilia meraviglia gargano nicolò cherished through many nicu challenges. being together. developmental observer • 2015 • 25 t h e i m p o r ta n c e o f s i l e n c e continued from page 5 d e v e l o p m e n ta l r e s e a r c h continued from page 21 n e o n ata l s u c k i n g p e r f o r m a n c e continued from page 15 28. bramwell r, weindling m. fvwr research team. families’ views on ward rounds in neonatal units. arch dis child fetal neonatal ed 2005;90:f429–f431. 29. phipps lm, bartke cn, spear da, et al. assessment of parental presence during bedside pediatric intensive care unit rounds: effect on duration, teaching, and privacy. pediatr crit care med 2007;8:220–224. 30. uhlig pn, brown j, nason ak, camelio a, kendall e. system innovation: concord hospital. the joint commission journal on quality improvement 2002;28(12):666-672. 31. bhansali p, birch s, campbell jk, et al. a time-motion study of inpatient rounds using a family-centered rounds model. hospital pediatrics 2013;3:31-38. 32. lehmann ls, brancati fl, chen mc, et al. the effects of bedside case presentations on patients perceptions of their medical care. n engl j med 1997;336:1150–1155. 33. rotman-pikielny p, rabin b, amoyal s, et al. participation of family members in ward rounds: attitude of medical staff, patients and relatives. patient education and counseling 2007;65(2):166-170. 34. landry m, lafrenaye s, roy m, cyr c. a randomized, controlled trial of bedside versus conference room case presentation in a pediatric intensive care unit. pediatrics 2007;120(2):275-280. 35. anderson rj, cyran e, schilling l, et al. outpatient case presentations in the conference room versus examination room: results from two randomized controlled trials. american journal of medicine 2002;113:657-62. 36. gustafson k, labrecque m, graham d, tella n, curley maq. facilitating parent presence on rounds in the neonatal icu. pediatr crit care med 2014;15(4): abstract 74. 37. subramony a, hametz pa, balmer d. family-centered rounds in theory and practice: an ethnographic case study. academic pediatrics 2014;14:200–206. 38. knoderer hm. inclusion of parents in pediatric subspecialty team rounds: attitudes of the family and medical team. acad med. 2009;84:1576–1581. 39. kleiber c, davenport t, freyenberger b. open bedside rounds for families with children in pediatric intensive care units. american journal of critical care 2006;15:492–5. 40. westrup, b. family-centered developmentally supportive care. neoreviews 2014;15:e325e335. 41. kowalski wj, leef kh, mackley a, spear ml, paul da. communicating with parents of premature infants: who is the informant? journal of perinatology 2006;26:44-48. 42. kelly mm, xie a, carayon p, et al. strategies for improving family engagement during family-centered rounds. j hosp med. 2013;8(4): 201–207. references 1. hempton g, grossman j: one square inch of silence. one man’s quest to preserve quiet. new york: free press; 2009. 2. hsu a, emerson j, levy m, de sherbinin a, johnson l, malik o, schwartz j, jaiteh m: 2014 environmental performance index (epi), full report and analysis. in. new haven, ct: yale center for environmental law & policy; 2014: figure 7, page 18. 3. garfinkel ap, waller sj: sounds and symbolism from the netherworld: acoustic archaeology at the animal master’s portal. pacific coast archaeological society quarterly 2012, 46(4):37-60. 4. rick jw: the character and context of highland preceramic society. in: peruvian prehistory: an overview of pre-inca and inca society. edn. edited by keatinge rw. cambridge: cambridge university press; 1988. 5. rick jw: prehistoric hunters of the high andes. new york: academic press; 1980. 6. waller sj: intentionality of rock-art placement deduced from acoustical measurementsand echo myths. in: archaeoacoustics. edn. edited by scarre c, lawson g. cambridge, england: mcdonald institute for archaeological research; 2006: 31-39. 7. halfwerk w, bot s, buikx j, van der velde m, komdeur j, ten cate c, slabbekoorn h: low-frequency songs lose their potency in noisy urban conditions. proceedings of the national academy of sciences of the united states of america 2011, 108(35):14549-14554. 8. slabbekoorn h: the impact of anthropogenic noise on animals. in: elsevier encyclopedia online. 2010. 9. beecher md, medvin mb, stoddard pk, loesche p: acoustic adaptations for parentoffspring recognition in swallows. experimental biology 1986, 45(3):179-193. 10. beecher md: kin recognition in birds. behavior genetics 1988, 18(4):465-482. 11. stoddard pk, beecher md, willis ms: response of territorial male song sparrows to song types and variations. behavioral ecology and sociobiology 1988, 22:125-130. 12. medvin mb, beecher md, andelman sa: extra adults at the nest in barn swallows. condor 1987, 89:179-182. 13. templeton cn, akçay ç, e cs, beecher md: juvenile sparrows preferentially eavesdrop on adult song interactions. in: proceedings of the royal society of london: 2009; 2009: 447453 b. 14. international fund for animal welfare: breaking the silence how our noise pollution is harming whales. in. australia: international fund for animal welfare; 2013. 15. carey b: ship noise drowns out whale talk a threat to mating. in. lifescience.com; 2005. 16. convention on biological diversity: scientific synthesis on the impact of marine noise on marine and coastal biodiversity and habitats. in.; 2012. 17. stebbins w: the acoustic sense of animals. cambridge: harvard university press; 1982. 18. babisch w: noise and health. environmental health perspectives 2005, 113(1):a14-a15. 19. goines l, hagler l: noise pollution: a modern plague. southern medical journal 2007, 100(3):287-294. 20. berglund b, lindvall t (eds.): community noise. stockholm, sweden: stockholm university and karolinska university; 1995. 21. stansfeld sa, matheson mp: noise pollution: non-auditory effects on health. british medical bulletin 2003, 68(1):243-257. 22. etzel ra, balk sj (eds.): handbook of pediatric environmental health, 2nd edn. elk grove village, il: american academy of pediatrics; 2003. 23. evans gw, lepore sj: non-auditory effects of noise on children; a critical review. children’s environments 1993, 10:42-72. 24. mackenzie v: cave in the snow: bloomsbury publishing; 2011. 25. maitland s: a book of silence. london, great britain: granta books; 2008. 26. moitessier b: the long way: doubleday publisher; 1974. 27. wollaston n: the man on the ice cap: the life of august courtauld. london: constable & robinson limited; 1980. 28. pinker s: the language instinct: w. morrow and company; 1994. 29. cage j: silence: lectures and writings. middletown, ct: wesleyan publishing house; 1961. 30. wordsworth w: ode: intimations of immortality from recollections of early childhood. poems in two volumes, and other poems, 1800-1807. new york: cornell university publisher; 1983. 26. miller jl, kang sm. preliminary ultrasound observation of lingual movement patterns during nutritive versus non-nutritive sucking in a premature infant. dysphagia. 2007; 2: 150-160. 27. mizuno k, nishida y, taki m, et.al. infants with bronchopulmonary dysplasia suckle with weak pressures to maintain breathing during feeding. pediatrics. 2007; 120, 4: 1035-1042. 28. palmer mm. identification and management of the transitional suck pattern in premature infants. journal of perinatology and neonatal nursing. 1993; 7,1: 66-75. 29. vice fl, gewolb ih. respiratory patterns and strategies during feeding in preterm infants. developmental medicine and child neurology. 2008; 50, 6: 467-472. 30. medoff-cooper, b, bilker, wb, kaplan, jm. suckling behavior as a function of gestational age: a cross-sectional study. infant behavior & development. 2001; 24: 83-94. 31. medoff-cooper b, ratcliffe sj. development of preterm infants feeding behaviors and brazelton neonatal behavioral assessment scale at 40 and 44 weeks postconceptional age. advances in nursing science, 2005; 28, 4: 356-363. 32. mizuno k. neonatal feeding performance as a predictor of neurodevelopmental outcome at 18 months. developmental medicine and child neurology. 2005;47,5: 299-304. 33. medoff-cooper b. sucking behavior of preterm neonates as a predictor of developmental outcome. journal of developmental behavioral pediatrics. 2009; 30: 16-22. 34. jones e, king c. (eds) feeding and nutrition in the preterm infant. london: elsevier: 2005; 174-175. 26 • 2015 • developmental observer developmental observer nidcap federation international board of directors and staff 2014–2015 the official newsletter of the nidcap® federation international to download the developmental observer please go to: nidcap.org president gretchen lawhon, phd, rn, cbc, faan nidcap master trainer email: premieg@gmail.com vice president for administration james m. helm, phd nidcap senior trainer director, carolina nidcap training center email: jhelm@wakemed.org vice president for organizational advancement deborah buehler, phd nidcap master trainer apib trainer associate director, west coast nidcap and apib training center email: deborahbuehler@comcast.net treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary kaye spence children’s hospital at westmead westmead, sydney, australia email: kaye.spence@health.nsw.gov.au jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university email: alberts@indiana.edu heidelise als, phd nidcap founder, past president 2001-2012 nidcap senior master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu nikk conneman, md nidcap trainer director, sophia nidcap training center rita cummings, ma vice president–operations san francisco zen center mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk kathleen vandenberg, phd nidcap master trainer director, west coast nidcap and apib training center email: kathy.vandenberg@ucsf.edu rodd hedlund, med director nidcap nursery assessment and certification program nidcap trainer email: nnacpdirector@nidcap.org sandra kosta, ba financial operations and administration director email: sandra.kosta@childrens.harvard.edu developmental observer • 2015 • 27 nidcap on the web to learn more about the nfi and its programs please visit us at www.nidcap.org please visit the nfi’s youtube channel to watch videos about nidcap (in 13 languages) and the nnacp. www.youtube.com/user/nidcapfi the nfi is pleased to announce the launch of its nidcap blog. the blog will offer observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. the first blog was written by founder, heidelise als, phd and our second blog post was written by vicki batkin-bjornson, a parent of a premature infant, and a former nfi board member. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. follow us on all of our social media platforms: like us on facebook follow us on twitter follow our posts on pinterest connect with colleagues on linkedin watch our videos on you tube read and participate on our nidcap blog https://www.facebook.com/nidcap https://twitter.com/nidcap https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international https://www.youtube.com/user/nidcapfi http://nidcap.org/blog/ http://nidcap.org/blog/ https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.pinterest.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international www.nidcap.org national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu sooner nidcap training center university of oklahoma health sciences center oklahoma city, oklahoma, usa co-director: andrea willeitner, md co-director and contact: eleanor (bunny) hutson, rn email: bunny-hutson@ouhsc.edu west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: kathleen vandenberg, phd associate director: deborah buehler, phd email: kathy.vandenberg@ucsf.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james m. helm, phd email: jhelm@wakemed.org colorado nidcap center university of colorado denver school of medicine and the children’s hospital aurora, colorado, usa director and contact: joy v. browne, phd, pcns-bc, imh (iv) mentor email: joy.browne@childrenscolorado.org st. luke’s nidcap training center st. luke’s children’s hospital boise, idaho, usa co-director: beverly holland, msn, rn, ne-bc co-director and contact: karen m. smith, rnc, bsn, med email: smithka@slhs.org karolinska nidcap training center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se french nidcap center medical school, université de bretagne occidentale and university hospital brest, france director: jacques sizun, md co-director and contact: nathalie ratynski, md email: nathalie.ratynski@chu-brest.fr sophia nidcap training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa director: beena peters, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu nidcap training and research center at cincinnati children’s cincinnati children’s hospital medical center cincinnati, ohio, usa director: whittney brady, msn, rn contact: linda lacina, msn email: nidcap@cchmc.org the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: dominique haumont, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no the barcelona-vall d’hebron nidcap training center spain hospital universitari vall d’hebron barcelona, spain director and contact: josep perapoch, md, phd email: jperapoc@vhebron.net hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, med contact: windy crow email: stjosephnidcap@dignityhealth.org italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com danish nidcap training and research center aarhus university hospital aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn newborn and email: hanne.aagaard@skejby.rm.dk são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org n i d c a p t r a i n i n g c e n t e r s by order of establishment http://nidcap.org/en/about-us/membership-overview/ 6 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aim to present the theoretical background of narrative medicine, highlight its specificities in the neonatal period, and show how nidcap is relevant at all stages of the narrative process. methods comparative analysis of the theory on nidcap and narrative medicine. results/findings the narrative process defined by rita charon1 is divided into three stages. attention is the first stage. it refers to the way practitioners listen to the patient’s behavior and talk. it needs a special state of mindfulness and attention, focused and open-minded. in the neonatal period, we listen to the baby’s behavior and to the parent’s story and behavior. the nidcap observation tool, naming, describing, and preselecting specific behaviors, helps us to listen to premature babies. with the help of narrative medicine, we can improve the way we listen to parents using our close reading session skills. during the close reading session, we learn to be actively aware of how the stories are told: perspective, form, temporal structure, plot, and desire. representation is the second stage. it refers to the way practitioners write what they have learned from the patient. when health professionals write, they discover aspects of the experience that were not evident to them. writing is revealing what was present but hidden. it reveals some truth about the patient, and about the writer themselves. it could be seen in the words chosen, or in the form of the writing. about the words, roland barthes2 makes a difference between denotation and connotation. in the neonatal period, we write about the baby’s behavior, and about the parents' stories. considering the baby’s behavior, the guidelines proposed to write the nidcap report reflect the care philosophy supported by nidcap. by introducing the baby by his name, we recognize him as a person. by using the active verb, he is a living person in motion. by writing in a fashion that is readily understood by and is supportive of parents, we testify to baby and family-centered care. by describing a baby as available to actively seek well-modulated functioning to approach stimuli, we defined them as an actor of their own development. respecting and endorsing those writing guidelines is pushing us to change our care philosophy. considering the parents’ stories, narrative medicine proposes to use a parallel chart. in this file, you write what the parents tell you, but also how you feel and react to it. once written, the parallel chart is used as a starting point for the reflective practice recommended during the nidcap process. affiliation is the last stage of the narrative process. it refers to how the patient and the practitioner share the writing producing an efficient and trustful partnership. this implies that they believe in the power of words, as john langshaw austin3 explains in the speech act. in the neonatal period, what is written on the baby by the professional and/or the parents can affiliate parents and health care professionals for the sake of the premature baby. the way nidcap recommendations are written is a tremendous example of this speech act. including parents’ preferences is a sign of affiliation with parents. starting recommendation with the behavior of the baby, and ending it with his developmental goal, is a sign of our affiliation with the premature baby. relevance to nidcap and conclusion to know the theory of narrative medicine helps us to understand how narration plays a powerful role in nidcap for the parents, and the professionals. references: 1. charon r. narrative medicine: honoring the stories of illness. 2006. oxford university press. 2. allen, g. roland barthes (1st ed.). 2003. routledge. https://doi. org/10.4324/9780203634424 3. oishi e. austin’s speech act theory and the speech situation, esercizi filosofici 2006, 1 (1):1-14. issn 1970-0164 narrative medicine and nidcap: what can we learn from each other? frédérique berne audeoud university hospital of grenoble, france doi:10.14434/do.v16i1.35768 the editorial team of the developmental observer is looking for nfi members who may be interested in becoming a reviewer for the do. if interested please send an email and a copy of your cv to the senior editor at developmentalobserver@nidcap.org 2024 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 hasanpour m1, zarezadeh m2, rahimi s3, kazemnejad a4 1 ph.d. and professor of nursing, nidcap professional, school of nursing and midwifery, tehran university of medical sciences, tehran, iran, 2 msc of nicn, school of nursing and midwifery, tehran university of medical sciences, tehran, iran, 3 phd of educational psychology, department of psychiatric nursing school of nursing and midwifery, tehran university of medical sciences, tehran, iran, 4 professor of biostatistics, school of medical sciences, tarbiat modares university, tehran, iran. aims a preterm infant's birth and admission to the newborn intensive care unit (nicu) cause parents to experience the loss of their 'ideal' child and reactions of grief, which are known as disenfranchised grief. the incidence of grief reactions in parents makes them susceptible to mental disorders. this reaction to grief and loss is considered an emotional crisis and can persist even after discharge from nicu to home. the purpose of this study was to investigate the effect of a peer support program on the disenfranchised grief severity of mothers with preterm infants. methods this study was a quasi-experimental quantitative study, which was conducted by convenient sampling on 108 (45 control and 45 intervention) iranian mothers with preterm infants admitted to the nicu. sampling was done first in the control group and then in the intervention group sequentially. the control group did not receive any training. however, the intervention was carried out in the intervention group. the intervention included accompanying and empathizing with mothers with preterm infants and supporting them in accepting the conditions by peer-supportive parents in a period of two weeks. peer-supportive parents were selected from experienced volunteer mothers with preterm babies hospitalized in the nicu. the mental health of peer-supportive parents was checked and confirmed using the ghq28 questionnaire, and then they underwent eight hours of training to implement the intervention. study data were collected using a researcher-made, valid, and reliable demographic and grief questionnaire. the participants in both groups completed the pre-test and post-test questionnaires immediately before and after the intervention. data were then analyzed using descriptive and inferential statistics such as paired t-tests, wilcoxon, and mann-whitney tests, using spss software version 16. results the results of the wilcoxon test revealed that in the control group, there was no significant difference in the average scores of grief of mothers of preterm infants before and after the intervention. however, in the intervention group, the paired t-test showed that the difference between the mean scores of grief before and after the intervention was significant (p<0.001). in addition, the results of the mann-whitney test indicated that before the intervention, there was no significant difference in the mean scores of grief between the control and intervention groups. however, after the intervention, the results of the mann-whitney test showed that the difference between the mean scores of grief between the control and intervention groups was significant (p=0.001). relevance to nidcap the newborn individualized develop mental care and assessment program (nidcap) is one of the current priorities of the neonatal health office in the ministry of health in iran and many other countries that emphasize the increasing presence of parents in nicus and support them by staff. infant and family-centered developmental care is one of the core principles of the nidcap model. mothers, as an essential component of the nidcap model, need emotional and empathetic support when they are grieving for their ideal child. conclusion the findings of the current research showed that parent-to-parent peer support intervention was an effective program to decrease grief severity in mothers with preterm infants. therefore, researchers emphasize the importance of receiving support from a parent who shares similar experiences and providing emotional and psychological support by maintaining respect and confidentiality and without prejudice to help mothers with premature babies admitted to the nicu. furthermore, they recommend the implementation of the parent-to-parent peer support program as a part of infant and family-centered developmental care/nidcap care to decrease the preterm infants' mothers disenfranchised grief severity that this may result in increased secure mother-infant attachment. keywords: preterm infant, disenfranchised grief, preterm infant’s mother, prematurity grief, parent-to-parent peer support program, neonatal intensive care unit the impact of the parent-to-parent peer support program on the disenfranchised grief severity of mothers with preterm infants doi 10.14434/do.v17i1.37043 6 • 2022 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 fujimoto t 1, ogaki a1, inoue t 1, kawai t 1, tanaka m 1, kugo m 2, browne j 3 1 rehabilitation department, japanese red cross society himeji hospital, himeji, hyogo, japan 2 pediatrics, japanese red cross society himeji hospital, himeji, hyogo, japan 3 pediatrics and psychiatry, university of colorado school of medicine, aurora, colorado, usa background non-invasive assessments of at-risk infants are important tools for recognizing individual needs for support and intervention, as well as the prediction of such needs. the apib (assessment of preterm infant’s behavior) is a sensitive technique for assessing prematurely born infants at early ages1 and, similarly, the gms (general movements) assessment at two – four months corrected age is used to predict developmental disorder.2 apib is based on the synactive theory and the nbas (neonatal behavioral assessment scale).3 it is a neurobehavioral battery that yields a panel of multicomponent “packages” reflecting the status of various physiological and regulatory systems in preterm infants. the gm’s greatest predictive value is around three months postterm (in the “fidgety” gm stage). the gm evaluation of hadders-algra yields a gestalt evaluation of movement complexity and variation, ranking infants as manifesting normal-optimal gms (no), normal-suboptimal gms (ns), mildly abnormal gms (ma), or definitely abnormal gms (da). aims the aim of this study was to test whether there are systematic relations between apib system scores before discharge and those of the gms assessment around three months corrected age. if there are reliable associations between the two measuring tools, the extra predictive powers may prove valuable to early detection of individual needs and to help guide intervention, remediation, and enhance developmental care. subjects and method among the very low birth weight (vlbw) infants admitted to our nicu/gcu from june 2019 to january 2021, 24 cases (10 boys, 14 girls, average birth weeks 29.7 ±3.2 weeks, average birth weight 1143.3 ± 248.6 g) were selected. they were the cases in which apib could be performed before discharge, and gm assessment performed around three months corrected age. excluded from the sample were infants with neurological abnormalities such as hypoxic-ischemic encephalopathy (hie) and periventricular leukomalacia (pvl). we used the mode of the post package status score of the apib system scores and summary score derived before discharge (mean 39.3 ± 1.4 weeks). we conducted the gm assessments around three months corrected age (average 3.1 ± 0.6 months); the classification of hadders-algra was used to evaluate in stages with no as 4, ns as 3, ma as 2, and da as 1. then, we examined quantitatively the relations between apib’s post package status score and summary score, and gm assessments. the apib procedure and scoring was performed by an apib professional; the gm assessments were conducted by three physiotherapists with gm training. statistical examination was carried out using spearman’s rank correlation coefficient (rs), and the risk factor p <0.05 was statistically significant. results there were statistically significant correlations between the apib’s physiology and regulatory systems post package status scores and gm assessments (physiology system: rs = -0.46, p <0.05; regulatory system: rs= -0.44, p <0.05). in contrast to these findings, no significant relations were found with the scores of motor system, state system, attention/interaction system, and examiner facilitation. also significant was the relation of the apib summary score and the gms assessment (rs = 0.47, p <0.05). conclusions we found that apib scores of the physiology and regulatory systems status in vlbw infants in the nicu/gcu predicted their general movements gm scores at about three months corrected age, during the so-called fidgety period. not only does the finding suggest the possibility of enhanced prognosis of developmental disorder, but it helps point to specific developmental systems that can be targeted for intervention. furthermore, these findings also suggest that the physiology system and regulatory system in the neonatal period may affect the subsequent development. nevertheless, the gms assessment may be influenced by state.2 thus, we may examine whether stable autonomic function, high self-regulation, and good wakefulness may help explain the pattern of the results. in the future, measures of variability in different infant populations could help clarify such interpretations. regardless, the present findings elevate the efficacy of a synactive-based method to link to another diagnostic tool for increased predictive power of the need for developmental support. references 1. als h, butler s, kosta s, & mcanulty g. the assessment of preterm infants’ behavior (apib): furthering the understanding and measurement of neurodevelopmental competence in preterm and full-term infants. ment retard dev disabil res rev. 2005; 11(1): 94–102. 2. hadders-algra m. general movements: a window for early identification of early identification of children at high risk for developmental disorders. j pediatr; 2004;145:s12-s18 3. brazelton tb and nugent jk. 2011. the neonatal behavioral assessment scale. mac keith press, cambridge. predictive relations between pre-discharge apib scores and postterm general movement (gm) assesment in very low birth weight infants doi: 10.14434/do.v15i1.33775 2023 • developmental observer • 29 m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 kelly janssens is a nurse-midwife and lactation consultant (lc), in the uz (university hospital) leuven neonatal intensive care unit (nicu), and nidcap-trainer at the nidcap training center uz leuven. she works part-time as a project coordinator for the belgian federal public service (fps) with expertise in breastfeeding and developmental care. in her remaining time, she is pursuing a midwife specialist degree at the ku (catholic university) leuven. how did infant and family-centered developmental care ‘come to life’ on the political agenda? an overview of key events that led to a structural approach to supporting developmental care in belgium. how it all started today the belgian federal public service (fps) supports neonatal units and their medical staff (both nursing and medical), to be trained in breastfeeding and developmental care programs such as nidcap and family and infant neurodevelopmental education (fine). the ultimate goal is to provide (preterm) newborn babies with the best possible start in life. this investment strategy did not however develop overnight. following the who and unicef’s global recommendations, the fps started to subsidize breastfeeding education programs after a law was passed in 1999 to establish a federal breastfeeding committee. to this day the breastfeeding coordination core group is entrusted with the task to promote, protect and support breastfeeding. its members, with a medical and nursing background, are approved by royal decree. apart from providing advice regarding breastfeeding policy measures, another of the members’ tasks is to monitor the baby friendly hospital initiative (bfhi) in hospitals. for the latter function two bfhi-coordinators were assigned in 2005. how the project expanded with developmental care in 2012, neonatologists prof. dominique haumont of the brussels nidcap training center and dr. anne clercx working at the fps, highlighted the importance of qualitative developmental care in neonatology to the policy makers. as a result, in 2013 a developmental care coordination team was formed in parallel with the breastfeeding coaching team. over and above helping teams evaluate developmental care practices in their neonatal units, the goal was to establish and ensure quality care for preterm born babies by additionally incentivizing training in nidcap and fine. after financially supporting the french speaking brussels nidcap training center, the fps chose to subsidize the designation of a flemish counterpart. the uz leuven nidcap training center was officially opened on the 7th of may this year. the belgian prime minister, alexander de croo, and the minister of social affairs and public health, frank vandenbroucke, were invited to give an introductory welcome speech at the symposium. in preparation of this visit, both ministers gained detailed information on both projects and were enlightened about the latest evidence on breastfeeding and developmental care. additional projects unfortunately put on hold, during the corona pandemic, such as the establishment of a donor human milk bank, were brought back to the table to ensure the continued commitment to the overall goal: improving the development for preterm born babies. future with 30 maternity wards certified with a bfhi-label (out of the 93 established maternity wards in belgium), and 16 (out of 19) belgian nicus involved in a nidcap-process, the fps is continually working on strategies to anchor breastfeeding and developmental care projects into a solid national care program for mothers and their newborn babies. one such strategy involves the endorsement of revised qualification standards for maternity and neonatology wards, requiring obligatory staff training in breastfeeding and developmental care. how can healthcare professionals influence the political agenda to improve newborn care? translation into practice doi: 10.14434/do.v16i1.35782kelly janssens kelly janssens 30 • 2023 • developmental observer a lthough neonatology is a technologically sophisticated medical field, its insights are too frequently slighted by parents, medical staff, and psychosocial support personnel. even today, neonatology lacks any kind of psychological specialisation, which has, for example, been a core component of paediatric oncology for many years. developing new modes of sensitive, individualized, attachment-based nursing, helping parents to bond with their baby born very preterm, implementing kangarooing for mothers and fathers, and 24/7 visiting hours should lead to a specialisation on psychological and trauma-related issues. furthermore, the medical and nursing staff should receive regular supervision as part of psychohygiene in order to foster sensitivity for the infants’ and parents’ needs, and to facilitate an attachment-based friendly atmosphere in the nicu. all this should focus on fostering secure infant-parent attachment development, despite the difficulties resulting from preterm delivery, complex newborn intensive care, and familial complications. our ulm study, which started about 20 years ago,1 was one of the first intervention studies, in which we focused on enhancing the development of attachment security in the preterm infant by supporting the parents through individual support, parent groups, and support during the transition from hospital to home. one aim was to mitigate previous unresolved issues of loss and trauma, as many parents had already experienced a stillbirth before they had to cope with a preterm delivery. we found that if the trauma of a previous loss has not been resolved, preterm birth triggers several trauma-related symptoms like avoidance of the baby, overanxiety, inability to psycho-neonatology: working with parents, preterm infants, and staff. the outcome of former preterm infants 20 years later doi: 10.14434/do.v16i1.35783 karl heinz brisch1, carmen walter2 1specialist in child and adolescent psychiatry, private medical school paracelsus salzburg, institute for early life care, salzburg, austria, and children’s hospital dr von hauner, department paediatric psychosomatic medicine and psychotherapy, university of munich, germany, 2specialist in education, formerly research assistant at the children’s hospital dr von hauner, department paediatric psychosomatic medicine and psychotherapy, university of munich, germany. carmen is a co-researcher with karl heinz brisch. karl heinz brisch reflection an important facilitator of bringing developmental care to the spotlight, was the publication of a report in march this year of the belgian health care knowledge center (kce)* on infant and family-centred developmental care (ifcdc) for preterm newborns. in the comprehensive report, the authors suggested recommendations for the implementation of ifcdc-principles to the fps, the minister and hospital boards. a group of experts (neonatologists and specialized nursing staff in neonatology) underlined the importance of these proposals. this collaboration between experts from the working field together with evidence from the literature, convinced policy makers of the necessity to establish a course of action and to continue the support of developmental care in neonatal settings. the opening ceremony of the nidcap training center in uz leuven, was the perfect opportunity to invite our ministers to the nicu to meet the parents of our vulnerable babies as well as the nursing staff personally, and to discuss why ifcdc is so important to sustain. the combination of the scientific report on ifcdc and the opening of the training center created momentum for current policy makers to finalize decisions that will result in the consolidation of both projects. we hope this will build a strong foundation on which to build, and to enhance chances for a better future of preterm born babies in belgium. references * detollenaere j, benahmed n, costa e, christiaens w, devos c, van den heede k. infant and family-centred developmental care for preterm newborns in neonatal care. health services research (hsr) brussels: belgian health care knowledge centre (kce). 2022. kce reports 350. d/2022/10.273/09. this document is available on the website of the belgian health care knowledge centre. https://kce.fgov.be/en m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 8 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 doi: 10.14434/do.v16i1.35771 cosimo ac1, boncompagni a1, bianchini a1, cipolli f1, cuomo g1, di giuseppe m1, lelli t1, lugli l1, muzzi v1, paglia m1, pezzuti l1, sabbioni c1, salzone f1, sorgente mc1, ferrari f2, berardi a2, bertoncelli n1 1department of mother's and child's health, neonatal intensive care unit, aou modena – italy, 2university of modena and reggio emilia – italy background preterm babies and their parents face a long and often complex journey in the newborn intensive care unit (nicu) from admission to discharge. as the parent-baby triad is the core of family centered care, parents should be welcomed in the nicu, integrated, and involved in their baby’s care. nicu staff should support parents in recognizing their baby's needs and in acquiring parenting skills. this approach could help to promote and establish the bonding between parents and babies, despite obstacles due to early separation and admission to the nicu. welcoming the parents of hospitalized babies in the nicu is always an important step in a continuous and multidisciplinary process. the nurse becomes the facilitator in the relationship within the triad. to the best of our knowledge, no studies described qualitatively structured parents’ involvement templates to be used in the nicu, but rather checklists that report the knowledge and skills that parents should acquire during the hospitalization of their baby.1,2 welcoming parents in the nicu has a dual function: it offers parents the opportunity to learn and understand their baby’s cues and supports professionals to guide them during their journey until the discharge.3 aims developing a specific and structured parent involvement template has two aims. first, to standardize the approach of the nicu professionals to the care of the babies; second, to support the parents in the process of acquiring their parental skills before discharge and to measure their level of self-efficacy (table 1). methods the standardization of nicu professionals’ behavior is assessed by identifying the number of professionals who fill out the parents’ involvement template. the level of parental self-efficacy is monitored through a specific tool (pmp s-e).4,5 results the standardization of nicu professionals’ behavior reduces the disparities and promotes a family centred approach to the care of babies and families. the active involvement of parents in the care of their baby during hospitalization facilitates and promotes parental early self-efficacy before discharge, greater self-confidence in their parental skills, and a reduction in the risk of subsequent hospitalizations. relevance to nidcap and conclusion the parents’ involvement template should become a central tool of nicu care for preterm infants, and it supports the implementation of family-centered, nidcap-oriented care. table 1. parents’ involvement template birth date ga at birth birth weight welcoming check in information leaflet locker date first contact parents interaction kangaroo care (kc) duration clothing mirror book breastfeeding promotion not done due to: baby’s clinical condition absent parents parents’ difficulties date kc parents involvement nappy (diaper) changing caregiver caregiver/parent parent abdomen assessment touch stooling caregiver caregiver/parent parent feeding tube bottle breast caregiver caregiver/parent parent hygiene practice sponging bath caregiver caregiver/parent parent special needs babies tracheostomy caregiver caregiver/parent parent gastrostomy caregiver caregiver/parent parent discharge self-efficacy complete self-efficacy incomplete notes parents’ involvement template: a tool to standardize caregivers’ approach to parents in nicu (references on p. 9) 6 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 6 • 2025 • developmental observer dr. heidelise als wrote …intuitive parenting must become conscious parenting when the child’s individuality portrays behaviors other than that which human expectation has prepared us for, in the thousands of years of evolution, to be good enough parents.1 dr. als understood that the greater an individual’s medical, physical, cognitive, and/or social/emotional challenges, the less likely that person can accommodate to their social or physical environment. these challenges may elevate the risk of adverse health outcomes and developmental issues, highlighting the critical importance of providing tailored care that supports both the individual and their family. this understanding informs the design and implementation of personalized care for premature and at-risk infants and their families. supportive care during hospitalization, as well as after discharge to home and community settings, promotes optimal well-being and positive outcomes. synactive model of behavioral organization – its origins in her work, dr. als drew from her personal parenting experiences as well as her clinical study of mother/infant relationships, including the study of infants with irritability and hypersensitivity. she saw the strength and importance of infant/ mother connections from the very beginning of their relationships. this awareness became even clearer through her early graduate school training, her mentorship and collaboration with t. berry brazelton, md, director of the child development unit at children’s hospital, as well as her use, training in, and adaptation of the brazelton newborn behavioral assessment scale. this is the foundation of the synactive model of behavioral organization and corresponding neurobehavioral observation and assessment tools, a caregiving intervention approach, and a training program. als and her child development unit colleagues, drs. brazelton, tronick and lester, wrote the seminal paper “toward a research instrument for the assessment of preterm infants’ behavior” describing the synactive model of behavioral organization.2 this developmental framework describes how humans’ continuous, dynamic interactions with their environments influence their behavior and development. the term “synactive” is from greek and latin origins meaning together (“syn”/greek) and action (“active”/latin). the “together in action” model was based on four principles of development: (1) phylogenetic and ontogenetic adaptedness (species adapt to their environments and are influenced by their environments allowing for adaptation); (2) continuous organism-environment transaction (organisms continuously interact with their surroundings, adjusting behaviors based on feedback received); (3) orthogenetic and syncretic (organism’s progressively develop as different abilities are integrated); and (4) dual antagonist integration (a tension exists between environmental protection and exploration). synthesizing these principles led to the theory that infants actively construct their own development within their physical and social environments and with the events that they experience. the newborn individualized developmental care and assessment program (nidcap)3 was designed to identify these adaptation strategies and as an earliest intervention approach for preterm and at-risk infants. the nidcap approach combines includes an infant observation instrument, a caregiving intervention model, and a training program. the synactive model: individuals, hospitals, and systems deborah buehler, phd west coast nidcap and apib training center, usa doi: 10.14434/do.v18i1.40899 adapted by buehler, d. (2024). 2025 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 2025 • developmental observer • 7 synactive model of organisms: individuals, hospitals, and systems in its broadest sense, the synactive model is applicable at many levels: the individual, the hospital (made of individuals, including premature and medically-at-risk infants), and the larger hospital and community system. individuals continuous dynamic interactions occur between individuals’ various layered subsystems of functioning (autonomic, motor, state, and attentional/interactive) and with their physical and social environments. this is a lifespan process occurring as individuals learn and evolve. early development sets the foundation for later development. initially, development occurs within the womb, with its protections and entrainments, and later within the extrauterine environment. for infants born prematurely, this includes the intensive care setting, with all the demands and challenges this environment presents at this critical time. these factors influence their unfolding development. premature and at-risk infants are actively shaping and being shaped by their environments. appreciating that growth and change occur within the context of interactions with the environment, offers the opportunity to understand the influences on, and implications for, stability, health and development. development implies both growth and change, unfolding initially through the disruption of previously established ways of functioning. new accomplishments become integrated by systems, realigning and supporting one another in new, adaptive ways. yet, for this realignment to occur, subsystem instability, disorganization, and de-synchrony may be experienced. lack of stability in one or more subsystems may lead to disorganization to the other systems with consequences for the infants’ efforts. the physical and social environment may thwart the subsystems’ efforts to re-balance, and/or it may provide positive steadiness and support for this re-alignment. these efforts enhance the developmental strivings toward the next steps. as an example, an infant lying on a flat mattress may become flaccid with arms and legs extended, show breathing pauses, compromised color and unsettled sleep. when this infant is gently positioned into side lying with the face protected from lights and calm, steady hand swaddling containments for shoulders, arms and head, the infant may begin to show relaxation. tone returns with tucked, flexed postures, hands rest by the mouth, breathing and color is regular and steady, and sleep becomes restful. infants continuously adjust their behaviors based on the feedback received from their surroundings. social and physical environmental support during periods of disorganization lead to subsystem rebalancing and steadiness. these adaptations provide positive behavioral support for the infants’ emerging developmental agenda. the synactive model of behavioral organization can be envisioned as a model of the developmental progression of individual human beings throughout their life span. each person experiences continuous, dynamic interactions with their physical and social environments which may support their strivings or may hamper their efforts both influencing experience and perhaps outcomes. the synactive model may be applied to nidcap’s professionals and supporters. every nidcap champion is a catalyst 2 4 5 8 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 8 • 2025 • developmental observer for positive change for infants, families, healthcare professionals, hospitals, and systems. inspiring, promoting, and guiding nidcap care are layers of the synactive system’s model. individuals who serve as nidcap mentors and supporters evolve and change as do the systems of which they are members. it is critical to seek out education, mentorship, and emotional support to ensure continuous, dynamic environmental interactions and to positively influence behavior, well-being, development, and effectiveness in others. hospitals/institutions the synactive model can be extended beyond the individual to institutions such as hospitals which are created and maintained to serve many individuals. each individual experiences their own autonomic, motor, state and attentional subsystem/environment interactions. in newborn and pediatric intensive and special care settings, infants, families, healthcare professionals, and the physical environment interact with one another. these interactions may be experienced as stabilizing and growth-promoting, or destabilizing, challenging and even, perhaps, detrimental. in the case of positive interaction among members of the system with common goals, the result may be a calmer more relaxed hospital unit; consistently steadier, healthier infants, ever more confident parents and families; and effective and satisfied healthcare professionals. conversely, difficult experiences from members of the hospital system, and/or the environment itself, may negatively impact the others. the results may be infants with breathing irregularities, difficulty feeding and growing, parents who are exhausted, worried, and sad, healthcare team members who feel challenged by high acuity and limited staffing, and a unit that is bright, loud and chaotic. any of these difficulties may lead to disruptions for the others. incorporating steady nurturance by families and knowledgeable healthcare professionals, within a supportive physical and social environment, provides for smooth moment to moment interactions and care. the ripple effects of positive experiences and interactions create synchrony and balance in the system which optimally change experiences and outcomes. the model and resources of the nidcap nursery program5 (add citation) describe this process of applying the synactive model to support optimal development and well-being. systems the synactive model may also be considered for the larger communities that hospitals serve and where individuals live. each of the layers: infants, families, hospital systems and entire communities are constantly evolving. they are interrelated and continually influence each other. the synactive model, in conjunction with the nidcap care it defines, has the extraordinary potential to change the course of lives and systems. nidcap has the potential to be adapted to other populations in healthcare, especially ones with patients and their families whose voices are not easily heard or needs understood (such as geriatric populations). moment-to-moment positive experiences support stability, developmental strivings, and ultimately optimal health and well-being for individuals, systems, and communities. these experiences can impact generations to come. the synactive model informs us that individuals (and the systems they are part of) are always changing. als wrote … each child actively shapes the adults and the environment around him or her, and that the adult, who becomes aware and has the emotional where-with-all to open earlier well-practiced ways, and see the child, becomes better for it.1 each new layer of being and of functioning, whether it is a person or a system, is built on the one before. cognitive flexibility is required to assess challenging situations and modify practices and policies to support change accordingly. every interaction and decision require the strength, capacity and confidence to be reflective about seeing, being shaped by, and shaping interactions and environments to help to bring out the best in others. when this happens, infants and families, and those who care for them, have the best chance for optimal functioning and well-being. references: 1. als, h. (2007). preparing to see and seeing. developmental observer, 1(2), 3-4, p.3. 2. als h, lester bm, tronick e, brazelton tb: toward a research instrument for the assessment of preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw (eds.), theory and research in behavioral pediatrics, vol. 1. new york: plenum, 35-63, 1982. 3. als h (1999). reading the premature infant. in goldson e (ed.) nurturing the premature infant: developmental interventions in the neonatal intensive care nursery. new york: oxford university press. 18-85. 4. buehler, d., kosta, s, als, h. (march 2018). nidcap federation international. 5. vittner d, butler s, lawhon g, buehler d. the newborn individualised developmental care and assessment program: a model of care for infants and families in hospital settings. acta paediatr. 2024 may 30. doi: 10.1111/apa.17300.. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 2023 • developmental observer • 17 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 artículo objetivo maryam fatollahzade, soroor parvizy, mandana kashaki, hamid haghani & mona alinejad-naeini (2020) the effect of gentle human touch during endotracheal suctioning on procedural pain response in preterm infant admitted to neonatal intensive care units: a randomized controlled crossover study, the journal of maternal-fetal & neonatal medicine. doi: 10.1080/14767058.2020.1755649 poco hay de ordinario en un día normal en una ucin. las 24 horas del día, los 7 días de la semana, la tecnología y la biomedicina se combinan con la aplicación experta de otras herramientas de "baja tecnología" y métodos "no tecnológicos". juntos, funcionan: los niños que nacen a partir de las 23 ó 24 semanas sobreviven y se desarrollan. el resultado milagroso se convierte casi en ordinario. pero ¿cómo se producen estos milagros? empecemos con uno de los elementos de la fórmula para hacer milagros: este elemento es el contacto humano. no necesita tecnología. nuestro artículo a revisión es un estudio reciente de fatollahzade1 que se diseñó para averiguar si una intervención denominada gentle human touch (ght) reduciría el dolor durante el procedimiento de aspiración de secreciones, comúnmente necesario para mantener abiertas las vías respiratorias de los niños prematuros intubados. la población del estudio estaba formada por 34 neonatos prematuros (nacidos entre las 27 y las 34 semanas). de forma inteligente, este equipo de investigación utilizó el régimen de cuidados en curso como banco de pruebas, sabiendo que el procedimiento de aspiración, vital para la asistencia respiratoria del neonato intubado, es potencialmente doloroso. el diseño del estudio fue "cruzado”, un enfoque eficaz y estadísticamente potente en el que cada niño se somete a pruebas con y sin la intervención experimental. el orden fue contrabalanceado, lo que significa que la mitad de los niños recibieron la intervención ght durante la aspiración en la primera observación y el tratamiento rutinario (sin intervención) durante la siguiente aspiración cuando se precisó. en la otra mitad de los niños se realizó en orden inverso. la intervención ght se administró a los niños colocados en decúbito prono en una postura ligeramente flexionada. el investigador colocaba una mano alrededor de la cabeza del niño y la otra alrededor de sus nalgas. se proporcionó ght mientras duró el procedimiento de aspiración. utilizando la escala de dolor del niño prematuro (pipp), se realizó una evaluación basal de 15 segundos antes de la aspiración, seguida de una evaluación de 30 segundos después de la aspiración. el pipp proporciona una puntuación numérica del dolor en tres rangos (de leve a grave). se la considera una escala bien validada y utilizada ampliamente en investigación.2 los resultados fueron impresionantes. con el cuidado rutinario, el 85% de los niños mostraron respuestas de dolor moderado al procedimiento de aspiración. el ght redujo la aparición de respuestas de dolor moderado al 65%. las respuestas de dolor intenso se manifestaron en cerca del 9% de los ensayos de control y el ght las redujo a cerca del 3%. estos resultados son un primer paso para añadir el contacto humano suave a la lista de métodos no farmacológicos de tratamiento del dolor en la ucin. muchos de nosotros conocemos los poderes del contacto piel con piel (método canguro),3,4 así como la eficacia del posicionamiento,5-6-8 la lactancia,9 la succión no nutritiva10 y la sacarosa oral11,12 entre muchos otros como métodos para mitigar el dolor. el artículo que comentamos ofrece una nueva contribución. se basa en los conocimientos anteriores sobre el ght y el tacto, abordando de una forma novedosa el abordaje del dolor durante la aspiración; ampliando el alcance de la pipp para su evaluación. queda mucho por aprender sobre el alcance, la magnitud y los resultados inexplorados del uso del ght. aunque es preliminar en varios aspectos, el estudio e fatollahzade et al.1 es elegante, sobre todo, si se considera desde el punto de vista de la ética biomédica básica. es importante señalar que el ght es seguro. no causó ningún daño. al registrarse explícitamente que el procedimiento no causaba ningún daño al niño, se reconocía formalmente una dimensión vital de su método. en otras palabras, aplicaron la conocida máxima "primum non nocere", es decir, "lo primero es no hacer daño". la importancia de hacer doble diligencia the importance of doing dual diligence author – jeff alberts, indiana university, nfi science committee, associate editor for science translator – maria maestro lopez, madrid, spain the original article written in english was published in the developmental observer 2022, vol 15, no 1. doi: 10.14434/do.v16i1.35781 i n t r a n s l a t i o n 18 • 2023 • developmental observer sin embargo, no basta con considerar que algo es ético porque el riesgo es mínimo. existe un imperativo ético que debe examinar si el procedimiento realmente "hace el bien"13... de hecho, fatollahzade y sus colegas lo demostraron, el ght redujo las respuestas al dolor. el suave contacto humano durante la aspiración proporcionó un beneficio real y activo. centrémonos ahora en “no dañar", en el lenguaje de la ética es la no maleficencia [mə-'le-fə-sən(t)s]. el principio de no maleficencia está muy presente en la ética médica. por encima de todo “priemum non nocere”. los niños atendidos en la ucin merecen un compromiso de no maleficencia. todos nuestros pacientes lo merecen. pero, de nuevo, no basta con evitar hacer daño. además, las prácticas éticas exigen que, además, promovamos y hagamos el bien. "hacer el bien" en el lenguaje de la ética es beneficencia [bə-'ne-fə-sən(t)s]. una hermosa palabra para un hermoso principio. mientras que la no maleficencia es principalmente una prohibición del daño; la beneficencia tiene al menos tres formas, cada una de las cuales debemos examinar dentro de nuestra conciencia a la hora de hacer el bien. como tal, la beneficencia incluye (a.) hacer el bien, (b.) prevenir el daño y (c.) eliminar el daño. en la ucin en el momento de enfocar el tratamiento ético de cada niño podemos decir que tenemos una moneda. esta moneda tiene dos caras: la no maleficencia y la beneficencia. las dos caras de una misma moneda son inseparables. debemos mantener la moneda en nuestra mano y hacerla girar continuamente examinando cada cara. esta diligencia obedece a la necesidad de observar ambas caras. por esta razón, estoy a favor de la etiqueta de doble diligencia, que estipula la obligación de respetar ambos principios: la beneficencia y la no maleficencia. abundan los ejemplos ilustrativos de no maleficencia sin beneficencia. ¡basta con ir al developmental observer ¡.14 la dra. ita litmanovitz, neonatóloga y formadora del nidcap, contribuyó con un comentario reflexivo y experto en la columna destinada a la ciencia. ita examinó un estudio con uso importante de tecnología en su diseño.15 en dicho estudio, los recién nacidos extremadamente prematuros fueron monitorizados durante sus primeras 72 horas con una combinación de saturación regional de oxígeno cerebral (crso2 ), mediante espectroscopia cercana al infrarrojo (nirs), eeg de amplitud integrada (aeeg), ecocardiografía funcional (echo), apoyados además por ecografías cerebrales. los autores concluyeron que esta monitorización multimodal "es factible, segura y bien tolerada por los niños extremadamente prematuros en las primeras 72 horas después del nacimiento". cierto, sí, pero ¡recuerda la doble diligencia! el comentario del dr. litmanovitz nos guía a través del conjunto de consideraciones críticas en el océano de datos que se recogieron; por supuesto sin dañar la piel de los recién nacidos ni aumentar los eventos adversos. a pesar del objetivo de los investigadores con el uso las medidas multimodales no se previno la hemorragia intraventricular ni se redujeron los resultados adversos. sin embargo, lo más grave fue que, para realizar estas mediciones, hubo una separación obligatoria de 72 horas entre el niño y la madre. está bien documentado que tales separaciones pueden tener efectos negativos tanto inmediatos como a largo plazo para el niño y su madre. la dra. litmanovitz se refirió a los costes de perder el contacto postnatal temprano entre la madre y su hijo, al tiempo que se buscaba algún beneficio no logrado de cara a prevenir un evento hemorrágico. la concienciación y la atención a la doble diligencia -reconociendo y documentando tanto la no maleficencia como la beneficencia-puede proporcionar la claridad que necesitamos para realizar una atención ética. la doble diligencia no sólo es totalmente compatible con la práctica del nidcap, sino que está integrada en ella. en la prestación de cuidados, en la formulación de protocolos de tratamiento y en la evaluación de la investigación, es imperativo que examinemos tanto el hecho de evitar el daño como el de hacer el bien. la doble diligencia es la base de una práctica guiada por la ética los milagros que ocurren en la ucin que permiten un buen desarrollo de los niños surgen de una combinación de alta tecnología, baja tecnología y no tecnología. no sabemos cómo se combinan para lograr el éxito, pero sí sabemos que todos ellos están implicados, y apuesto a que no es mediante una simple suma de factores separados. cada modalidad apoya a las demás. la alta tecnología médica es crucial. pero también lo es el amor de los padres y el contacto humano. recuerda siempre que un día normal en una ucin se construye desde lo extra-ordinario. “ordinarie” en francés antiguo, hace referencia a una regla ó ordenanza, referidas a las reglas que prescriben las formas de acción, de ella se forma la palabra inglesa ordinary o castellana ordinario. piensa en los protocolos que sigues para hacer un día ordinario. de este modo, todo lo que haces consigue que los milagros sean casi ordinarios. busca y ve la dualidad de la no maleficencia y beneficencia presente en un simple protocolo. en el cuidado del desarrollo, son el núcleo de lo milagroso. references 1. fatollahzade m, parvizy s, kashaki m, haghani h, alinejad-naeini m. (2020) the effect of gentle human touch during endotracheal suctioning on procedural pain response in preterm infant admitted to neonatal intensive care units: a randomized controlled crossover study, the journal of maternal-fetal & neonatal medicine, doi: 10.1080/14767058.2020.1755649 2. stevens bj, gibbins s, yamada j, et al. (2014) the premature infant pain profile-revised (pipp-r): initial validation and feasibility. clinical journal of pain, 30(3):238–243. doi: 10.1097/ajp.0b013e3182906aed 3. mosayebi z, javidpour m, rahmati m, et al. (2014) the effect of kangaroo mother care on pain from heel lance in preterm newborns admitted to neonatal intensive care unit: a crossover randomized clinical trial. journal of comprehensive pediatrics, 5(4):1–6. doi : 10.17795/compreped-22214 4. johnston c, campbell-yeo m, disher t, benoit b, fernandes a, steiner d, inglis d, zee, r. (2017) skin-to-skin care for procedural pain in neonates, cochrane database systematic reviews, 2 (2): cd008435. doi: 10.1002/14651858. (continued on p. 31) 16 • 2023 • developmental observer french polynesia is an ‘overseas collectivity’, part of the french republic, located in the south pacific ocean, 8000km from australia and chile and 4000km from hawaii. it comprises 118 islands of which 76 are inhabited. these islands, with their heavenly landscape, extend over a maritime surface equivalent to europe. it has approximately 280,000 inhabitants, with a majority of polynesians ‘maohi’ (65%) and metis/mixed ‘demis’ (16%), a minority of caucasians ‘popâa’ (12%) or asians (5%), mostly from chinese origin. this population is young: 36% under 20 years old. the polynesian language (maori) remains widely used in daily life. the artistic heritage is rich in particular songs, dances, and the very old art of tattooing. culturally the child exists from procreation and not only from birth. there is a close continuity between the mother and the child: only one body. massage, breastfeeding, skin to skin are major elements of traditional polynesian care, the expression of bodies and emotions. the nuclear family is a recent concept. traditionally, the child is cared for at the beginning by the mother and then by the clan. the child can be designated "faamu" and then change his/her caregiver, on the decision of the grandmother or the group, in the event of failure of the mother, or traditionally to support grandparents. the child can also be given to a sister, a cousin, or a loved family member because this woman has no child. however, the infant must remain in contact with his original family. this tradition has been disrupted by european adoption of international children causing a break with the biological parents and a change of family name, creating loyalty issues for the developing child. the french polynesia hospital (chpf) is a modern hospital that opened in 2010. the neonatology department includes 24 intensive care beds and six neonatal beds within the maternity unit. it is the only level three neonatal center in polynesia. it stays in a relationship with the maternity units or perinatal centers in papeete, the capital, or in other archipelagos (society and the marquesas islands), some over 1400km from the chpf. the french polynesia hospital the neonatal care team includes six neonatologists, a nurse manager, 30 nurses and 19 assistant nurses, a psychologist, a therapist, a breastfeeding consultant, and a milk-bank manager. the nicu cares for preterm and full-term newborns and their families. newborns who require urgent neonatal surgery are transferred to auckland nicu (new zealand) or paris (france). the entire population has health insurance. the former medical directors, dr. micheline papouin and phippe kuo († 2019) were the initiators of the implementation of family-centered developmental care in the unit. the training began in 2004 with the support of the brest nidcap training center (dr. nathalie ratynski, pr. jacques sizun). that year, all medical and nursing staff benefited from a short training (two days), ‘introduction to developmental care’ focused on brain development, the importance of the early environment, the crucial role of parents, and system change. this training was renewed in 2005 and 2012. global perspective on developmental care french polynesia jacques sizun. french nidcap center, toulouse, france doi: 10.14434/dov16i3.36570 2023 • developmental observer • 17 developmental care training group in 2018 in 2019, dr. ratynski started fine 2 training, mainly via video conference and email exchange due to the covid pandemic. three neonatologists and three nurses have thus become fine 2 certified. one of the challenges in maintaining an optimal quality of developmental care is the high turnover of the nursing team. this underlines the need to train professionals very regularly. the current project is to train a trainer (temara mariteragi) to achieve certification both in nidcap and baby friendly hospital initiative. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2023. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer brain injury remains one of the major unresolved challenges in neonatal care. with improvements in the overall survival rate of newborn infants, it was natural that attention would shift to intact survival and good neurodevelopmental outcomes. it is widely acknowledged that neonatal brain injury is the result of the complex interaction between pathological processes, the developmental trajectory, genetic susceptibility, and environmental influences. hence, no single intervention can have a significant effect on outcomes for the infant. rather, a coordinated, interdisciplinary approach combined with precise clinical care is needed to facilitate new neuroprotective approaches to the phenomenon. this understanding has been translated into several concepts of neonatal care. two distinct examples are the "small baby unit"1 and the "neuro-intensive care nursery" ("neuro nicu").2 the two nicu modalities advocate for the implementation of uniformly standardized care guidelines, adherence to evidencebased practices, and the creation of comprehensive and multidisciplinary teams. however, while the target of the "small baby unit" is the unique population of extremely low gestational age (elga) infants, the target population of the "neuro nicu" includes all newborns at risk of brain damage, including full-term infants with hypoxic ischemic encephalopathy (hie) or suffering from strokes or seizures, as well as elga infants. furthermore, the concept of the "small baby unit" focuses on optimization of care for these uniquely vulnerable infants in the context of parent-centered care principles. the "neuro nicu", for its part, relies on the use of advanced technology such as modern neuromonitoring and neuroimaging, as described in the target article. so, despite the common goal of improving developmental outcomes, the two models for preterm infant care differ greatly. severe intraventricular hemorrhage (ivh) and white matter injury are associated with a significant risk of adverse neurodevelopmental outcomes and remain a persistent challenge for preterm infants. the first 72 hours after birth present with the greatest risk of brain injury and is considered "the critical window" for intervention and preventing neurological damage. many quality-improvement (qi) projects aimed at preventing ivh focus on this critical period. the study by deshpande et al., "combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants", is a prospective observational cohort study investigating the feasibility and safety of advanced cerebral and hemodynamic monitoring in this population of vulnerable infants during this sensitive period. study details fifty infants born between 23+ 0 and 27+ 6 weeks gestation were enrolled on the study. the infants had all been managed using an ivh prevention bundle, which included midline head positioning and minimal handling. cerebral regional oxygen saturation (crso2) and integrated eeg (aeeg) were measured continuously, and echocardiography (echo) and head ultrasounds were performed 2-4 times. the small head size, fragile skin, coexisting headgear with an interface for ventilatory support, and high ambient incubator humidity all made sensor application challenging. however, the study demonstrated that the combined monitoring approach was feasible with 98% of the infants. mild erythema without skin breakdown beneath crso22 sensors was noted in 8/50 subjects (16%), and desaturations were reported during 17/197 (8.6%) of the ultrasound studies. compared to infants with no ivh, infants with severe ivh (grade iii/iv) showed a different pattern of cerebral and systemic hemodynamics. specifically, changes detected by nearinfrared spectroscopy (nirs) showed low crso2 and high cerebral fractional tissue extraction, consistent with physiological changes related to hypoxia-reperfusion – known to be one of the risk factors for ivh.3 however, since the study was not designed to identify specific variables predicting ivh, along with the low incidence of severe ivh (8%), the clinical relevance of this observation could not be assessed. the authors concluded that cerebral and cardiovascular multimodal monitoring for elga infants is safe and well-tolerated, with a low adverse event rate. technological advances the technological development of non-invasive bedside techniques over recent years has allowed the bedside monitoring of heart function and hemodynamics by functional echo, combined multimodal cerebral monitoring and focused hemodynamic assessment in extremely low birth weight infants – potential benefits or potential costs? ita litmanovitz, md israel nidcap training center, meir medical center, kfar-saba, israel, affiliated to sackler school of medicine, tel-aviv university, tel-aviv, israel. nidcap & science sub-committee, nfi t h e s c i e n c e d e s k doi: 10.14434/do.v14i2.33001 18 • 2021 • developmental observer target article: combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants. deshpande p, jain ríos dr, bhattacharya s, dirks j, baczynski m, mcnamara kp, hahn c, mcnamara pj, shah p, guerguerianb am. neonatology 2020; 117:504–512. doi: 10.1159/000508961 cerebral oxygenation by nirs, as well as cerebral electrical activity by aeeg. this type of monitoring can support clinicians in identifying infants at risk of ivh, to allow for early neuroprotective interventions. functional echocardiography and nirs have been used as clinical and research tools to assess changes in systemic and cerebral blood flow and oxygenation during transitional circulation in preterm infants. it has been documented that both cerebral blood flow and cerebral oxygenation are lower for infants who develop ivh3. however, it is yet to be determined whether monitoring cerebral oxygenation, if combined with clinical interventions when cerebral oxygenation levels are outside the desired range, can prevent cerebral injury and improve neurological outcomes. a recent multicenter randomized clinical trial, the safeboosc,4 demonstrated that it was possible to reduce the burden of cerebral hypoxia during the first 72 hours of life using treatment guidelines for respiratory and hemodynamic support. however, despite reductions in cerebral hypoxia for less than half of the treatment group, there were no differences in brain injury markers between the groups: neither in the aeeg tracing, nor in specific blood biomarkers.5 the authors questioned the significance of cerebral hypoxia as an etiology for brain injury, recommending that the guidelines should not be used outside a research setting.5 functional echocardiography can provide direct assessment of hemodynamics at the bedside and can be used as a modern hemodynamic monitoring tool in the neonatal intensive care unit. this is currently regarded by many clinicians as an extension to the infant clinical examination in conditions such as neonatal hypotension and shock, suspected patent ductus arteriosus, and suspected persistent pulmonary hypertension of the newborn.6-10 the anatomic, physiological, and hemodynamic information provided by a functional echo can be used in directing specific interventions and evaluating response to treatment.6 it has been shown that a functional echo, when carefully performed by a trained neonatologist, is well tolerated even by extremely preterm infants.7 in combination with blood pressure measurement, it can provide essential information about the hemodynamic status of the newborn and enables a targeted hemodynamic management approach that can account for the underlying pathophysiologic mechanisms of circulatory failure in the individual patient.6-9 toyoshima et al. demonstrated in a prospective cohort study that tailor-made circulatory management significantly reduced both the incidence and the severity of ivh, improved survival rates, and was associated with a trend towards a decrease in mental retardation.9 an echocardiographic assessment of the hemodynamic status of the newborn has the potential to improve neonatal intensive care; however, there is still a paucity of prospective studies demonstrating improved outcomes. the combined monitoring also included recordings of an aeeg and a head ultrasound. both are used mainly to estimate the timing of the brain injury and its severity, to improve prognosis prediction.10 changes in cerebral oxygenation during head ultrasounds were reported previously for more than half of the infants;11 indeed, qi projects aiming for neuroprotection recommend postponing the first ultrasound until 72 hours after birth.12 there is more to multimodal cerebral monitoring, as pointed out by deshpande et al. the illustration in fig. 1 presents compelling proof of the possible impact of multimodal monitoring on bonding processes and parental stress – both recognized as factors that can affect long-term neurodevelopment. implications for nidcap there is a significant body of evidence showing the positive effects of sensitive and responsive maternal behavior on child development. higher levels of early maternal responsiveness, sensitivity and positive mind-set have been positively associated with infants’ cognitive and social-emotional development, supporting the proposition that healthy early mother-infant interactions can improve not only behavioral but also developmental outcomes13. the first hours after birth represent a crucial period: not only in a physiological sense, due to the hemodynamic instability and transitional processes involved in it, but also because this is a sensitive period for the mother-child interaction, setting the basis for subsequent maternal behavior. close contact between mother and child in the first hours after birth is essential, to provide the optimal conditions for the maternal behavior that will facilitate secure attachment in the first year of life. separation following birth restricts opportunities for the mother-infant dyad to engage in intimate physical contact, potentially altering the unfolding of the affectionate bond between mother and infant. in very low birth weight preterm infants, close contact between mother and child is not routinely possible. the technical environment of the baby and the architecture of nicus pose additional barriers to physical closeness. this separation hampers normal physical contact and emotional closeness between the parents and their infant, with long-lasting figure 1. premie hal® manikin (gaumard® scientific) with a crso2 sensor on the forehead and 3 aeeg sensors on the scalp, as described by deshpande et al. developmental observer • 2021 • 19 consequences for emotional programming, neurodevelopmental outcomes, and parental mental health.13, 14 several studies have reported differences in the bonding behavior of the mothers of preterm and full-term infants. mothers of preterm infants were found to show less secure attachment, as well as less acceptance of the infant and reduced caregiving sensitivity12,13 feldman et al.14 showed that the delayed first contact between mother and child led to the decrease of maternal attachment behaviors and representations. mehler et al.15 demonstrated that mothers who were able to see their infant in the first 3 hours after birth developed a more optimal maternal attachment. thus, strategies to facilitate bonding, despite the obstacles posed by the infant’s neurobehavioral immaturity and medical challenges, are an imperative in the nicu setting. moreover, these strategies need to be anticipated and intentional, designed by and considered from the different perspectives that a multidisciplinary and well-coordinated team can provide. for parents, the extreme preterm delivery of their infant will be a traumatic experience, one followed by a phase of extreme psychological disturbance. many parents feel detached and separated from their infants as they cannot or do not feel able to interact as freely with their infant as they would with a full-term infant at home. a recent meta-analysis underlines the fact that parents may be extremely distressed and disturbed by the sight of their baby attached to tubes and equipment, and by the fragile appearance of extreme preterm infants. indeed, the stress related to the physical appearance of their infant was found to be the second greatest source of burden for parents;16 so, it is of concern that the extra tapes and tubing of the multimodal monitoring approach may be an additional source of distress for both mothers and fathers. future studies must include an assessment of the impact of multi-modal monitoring on opportunities for early bonding, and on parental stress. personal reflection i should disclose that my insights on the article by deshpande et al. are influenced by my perspective as a neonatologist and nidcap trainer. after a 30-year professional career, and with the equanimity and wisdom that retirement allows, i truly believe that the biggest achievement in my career was being part of the transformative processes that my own nicu went through, to offer individualized and supportive care for infants and families in the framework of the nidcap nursery program. therefore, until more evidence is available, my answer to the first question – does combined multimodal cerebral monitoring poses potential benefits or potential cost? – is probably individualization. that is to say, individualized monitoring and individualized care in the context of family-centered care.17 accordingly, i will probably advocate for the development of "small baby units" over "neuro nicus", because they allow for the appropriate family-centered developmental care that can address the different needs of extreme preterm infants. there is a growing body of evidence suggesting that family-centered and developmental care strategies have the potential to improve neurodevelopmental outcomes, and that these need to be considered as an essential part of future neuroprotection care bundles.17 references 1. fathi o, nelin ld, shepherd eg, reber km. development of a small baby unit to improve outcomes for the extremely premature infant. journal of perinatology. 2021, 12:1-8. doi: 10.1038/s41372-021-00984-0. 2. austin t. the development of neonatal neurointensive care. pediatric research. 2019, 12-18. doi: 10.1038/s41390-019-0729-5 3. lim j, hagen e. reducing germinal matrix-intraventricular hemorrhage: perinatal and delivery room factors. neoreviews. 2019; 20(8): e452-e463. doi: 10.1542/neo.20-8-e452 4. pellicer a, greisen g, benders m, et al. the safeboosc phase ii randomized clinical trial: a treatment guideline for targeted near-infrared-derived cerebral tissue oxygenation versus standard treatment in extremely preterm infants. neonatology 2013; 104:171–8. doi:10.1159/000351346 5. plomgaard am, van oeveren w, petersen th, et al. the safeboosc ii randomized trial: treatment guided by near-infrared spectroscopy reduces cerebral hypoxia without changing early biomarkers of brain injury. pediatric research. 2016; 79(4):528-35. doi: 10.1038/pr.2015.266 6. tissot c, singh y. neonatal functional echocardiography. opinion in pediatrics. 2020; 32(2):235-244. doi: 10.1097/mop. 7. de boode wp, van der lee r, horsberg eriksen b et a.l european special interest group ‘neonatologist performed echocardiography’ (npe). the role of neonatologist performed echocardiography in the assessment and management of neonatal shock. pediatric research. 2018; 84(suppl 1):57-67. doi: 10.1038/ s41390-018-0081-1. 8. giesinger re, mcnamara pj. hemodynamic instability in the critically ill neonate: an approach to cardiovascular support based on disease pathophysiology. seminars in perinatology. 2016; 40(3):174-88. doi: 10.1053/j.semperi.2015.12.005 9. toyoshima k, kawataki m, ohyama m et al. tailor-made circulatory management based on the stress-velocity relationship in preterm infants. journal of formos medical association. 2013; 112(9):510-7. doi: 10.1016/j.jfma.2013.02.011. 10. pisani f, spagnoli c. monitoring of newborns at high risk for brain injury. italian journal of pediatrics. 2016; 14;42(1):48. doi: 10.1186/s13052-016-0261 11. murthy p, zein h, thomas s. neuroprotection care bundle implementation to decrease acute brain injury in preterm infants. pediatric neurology, 2020; 110:42-48. doi: 10.1016/j.pediatrneurol.2020.04.016 12. forcada-guex m, pierrehumbert b, borghini a et al. early dyadic patterns of mother-infant interactions and outcomes of prematurity at 18 months. pediatrics. 2006,118(1): e107-14. doi: 10.1542/peds.2005-1145. 13. korja r, latva r, lehtonen l. the effects of preterm birth on mother-infant interaction and attachment during the infant’s first two years. acta obstetrics gynecology scandinavia. 2012; 91(2):164– 73. doi: 10.1111/j.16000412.2011.01304.x. 14. feldman r, weller a, leckman jf, kuint j, eidelman ai. the nature of the mother’s tie to her infant: maternal bonding under conditions of proximity, separation and potential loss. journal of child psychology psychiatry. 1999; 40: 929–939. pmid: 10509887. 15. mehler k, wendrich d, kissgen r, et al. mothers seeing their vlbw infants within 3 h after birth are more likely to establish a secure attachment behavior: evidence of a sensitive period with preterm infants? perinatology. 2011, 31(6):404-10. doi: 10.1038/jp.2010.139. 16. caporali c, pisoni c, gasparini l, ballante e, zecca m, orcesi s, a global perspective on parental stress in the neonatal intensive care unit: a meta-analytic study. provenzi l. journal of perinatology. 2020, 40(12):1739-1752. doi: 10.1038/s41372-020-00798-6. 17. soni r, tscherning wel-wel c, robertson nj. neuroscience meets nurture: challenges of prematurity and the critical role of family-centred and developmental care as a key part of the neuroprotection care bundle. archives of disease in childhood, fetal neonatal edition. 2021 fetalneonatal-2020-319450. doi: 10.1136/archdischild 20 • 2021 • developmental observer 14 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 mazlan m1, qureshi n1, george b2, dela cruz a2, motala r1, tscherning c3 1 allied health, sidra medicine, qatar, 2 neonatology, sidra medicine, qatar, 3 neonatology, oslo university hospital, norway introduction sidra medicine is the only 4 neonatal intensive care unit (nicu) in qatar and was opened in 2018. eastern and western practices of neonatal care converge in this nicu. a multidisciplinary team was formed to identify the challenges of the nicu and address areas where incremental changes would have a significant impact on neurodevelopmental care. aim the aim is to improve and promote awareness and implementation of neurodevelopmental care. methods a plan-do-study-act cycle (pdsa) was used (figure 1) by a core multidisciplinary team known as the managing infant neurodevelopment (mind). an initial survey was carried out in the nicu to get a baseline understanding of the overall knowledge and awareness of neurodevelopmental care. based on the results, the team was divided into subgroups to address the individual issues identified. a key intervention was family and infant neurodevelopmental education (fine 1) training for all nicu staff with a selected team (n=10) to continue on fine 2 training. weekly education sessions on various topics related to neurodevelopmental and family centered care were implemented to the wider multidisciplinary team followed by a follow-up survey aimed at understanding changes in awareness of neurodevelopmental care. results in the initial survey, 89% of staff acknowledged the importance of neurodevelopmental care, but only 4.6% of staff had completed any formal training. all staff were mandated to complete fine 1 training during a four-month period (n= 250). in the follow-up survey, 93% of staff acknowledged the importance of neurodevelopmental care, 64% could identify that the baby was stressed and needed a break and 73% could identify the baby’s strategies to self-regulate. discussion/ relevance to nidcap implementing fine training in the nicu improved the knowledge around developmental care and observation of the newborn. response rates were low in the two surveys [68% response rate (n=179) versus a 30% response rate (n=49)]. it may be reflective of the high turnover encountered as a response to the covid-19 pandemic and subsequent lockdown. during the pandemic, there has also been an influx of quality improvement projects within the nicu. while having the commitment to change is encouraging, it can also be overwhelming and mentally exhausting to continually overcome challenges to facilitate positive change. protecting dedicated time for the core group to be able to educate the wider team was challenging and this was addressed by a proposal from the core group to the leadership team emphasizing the importance of implementing neurodevelopmental care. weekly protected education time was granted and such training for the professional healthcare team and managing resources is also a part of the nidcap philosophy. implementation of the fine program which focuses on an understanding of the interconnection of the autonomic, motor, and state subsystems and reading the subtle cues of the baby’s communication through their behavior and self-regulation creating awareness of the impact of neurodevelopmental care in a level 4 multicultural greenfield nicu: a quality improvement project implementing fine doi 10.14434/do.v17i1.37046 figure 1: pdsa cycle 2024 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 before, during, and after caregiving procedures will enable caregivers to maximize comfort during caregiving, alleviate pain and support infant’s organization, which are components of nidcap’s philosophy for infant care. conclusion this quality improvement project has succeeded in creating awareness of the importance of neurodevelopmental care and its lasting impact, opening the door for targeted education sessions and further bedside learning. each member of the multidisciplinary nicu team has a responsibility to ensure they follow standards of practice and understand its implications. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2024. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer our sponsors dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. sponsor of the nfi and the 34th annual nidcap trainers meeting. dandle•lion medical, the leader in neurodevelopmental care, makes it easy to provide consistent, effective, evidence-based care for hospitalized babies. our patented positioning aids provide a womb-like experience while our education programs meet ongoing clinical needs. becoming part of our dandy pride of lions means providing the best care for your patients, support for your clinicians, and value for your organization. sponsor of the 34th annual nidcap trainers meeting 18 • 2021 • developmental observer the uk nidcap centre was originally based at st mary’s hospital in london with inga warren cbe, primary author of the fine programme, as senior nidcap trainer. following mergers and reorganisation of hospitals within the trusts, the training centre moved down the road to uclh, london nhs foundation trust in 2017. the centre director is professor neil marlow with dr. giles kendall, clinical lead for the neonatal unit (nnu), as operational director. the core strategic team is comprised of senior neonatal staff including the lead nurse and two additional consultants, and education and development team representatives. the group is chaired by a parent representative, the mother of a girl born extremely preterm 15 years ago and cared for at uclh. unfortunately, a current team photo is not available due to covid-19 restrictions. the objectives of the uk nidcap centre are to deliver a unique educational programme designed to promote optimal developmental outcomes for high risk preterm and full term babies, and to improve the experience of hospital care for infants and parents. an additional aim is to create infant and family centered developmental care leaders in the uk. to achieve our objectives, teaching is a prime focus with routinely scheduled fine level 1 and 2 courses run by nidcap professionals. attendance at these courses is a pre-requisite for those intending to progress to nidcap training. pre-fine education has been trialled and is currently being adapted for online use in collaboration with the australasian nidcap training centre. the idea is to incorporate this into induction for new staff, so they begin to associate the impact of their input and interactions on brain development. fine level 3, which supports innovation and leadership, has also been available with inga warren and beverley hicks as mentors. a quality improvement project on non-pharmacological pain management undertaken by one participant, a neonatal consultant, was recently presented at an international conference1. we strive to provide ongoing contact and support for fine 2 and nidcap training centers around the world the uk nidcap centre at university college london hospital (uclh) doi 10.14434/do.v14i1.31815 the neonatal team, uclh, celebrating world prematurity day with 'superheroes' theme developmental observer • 2021 • 19 nidcap graduates through masterclasses, the most recent being held in london and bristol. on a wider scale, both trainers, inga warren and gillian kennedy present regularly at interna tional conferences. inga warren also runs fine courses abroad with other faculty members who are all nidcap professionals. the courses in hungary and romania have been run in collaboration with parent organisations. additionally, both inga warren and gillian kennedy are actively involved in research and development, with two publications produced this year relating to infant and family centred care2,3. research involving the use of our angel eye© webcam on the neonatal unit is in progress. the origins of this research links back to the 2016 nidcap trainers meeting journal club in bologna, italy and the subsequent 2017 presentation at the congress of joint european neonatal societies (jens) in venice. in preparation for this, staff were surveyed for their views on the introduction of webcams. the information garnered from the survey is forming part of the research study. the same team is also keen to explore the impact of masks on language development in partnership with other centres to enable comparison between units where practice has varied. where possible, we promote the nidcap philosophy in a wider arena. inga warren frequently works jointly on projects with our nidcap colleagues around the world4. gillian kennedy is an expert advisor for the national institute for clinical excellence (nice) and was a committee member for the guideline on specialist neonatal respiratory care. in 2020, the coronavirus pandemic began impacting babies cared for in neonatal units and their families worldwide. even within the same city, neonatal units adopted different practices, with some restricting parental presence and/or requiring masks be worn. here at uclh, our nidcap centre base, the ethos of not separating babies and parents has been maintained, although siblings and other close family members are currently not able to be present. guided by our infection control nurse lead, also a senior neonatal nurse, parents who are asymptomatic have unrestricted access and are not required to do any more than the usual handwashing practice. no protective aprons, gloves or masks are worn, and both parents are welcome to be with their baby for as long as they want. unsurprisingly, covid-19 has had a negative effect on wider ranging matters related to the uk nidcap centre. at the start of 2019, there was agreement of the need to establish a new trainer-in-training position and approval was given by the nfi board. the intention was to identify funding from the women’s health directorate to fulfil this aim by augmenting monies generated from running fine courses at the trust. regrettably, the introduction in march last year of a new electronic patient record system and the current ongoing health crisis are issues which, understandably, have taken priority and redirected resources. nevertheless, the future looks brighter with more robust measures closer to being ratified which would allow us to begin this training. this situation perhaps brings to light a situation which may impact others in the nidcap community. the move from st. mary’s to uclh plus intervening factors described above have meant the centre is still becoming established on this site. in addition to this, the present trainers are of retirement age (although much younger in spirit!). both factors provide extra challenges for the new trainer-in-training and thought is being given as to how best we can support this individual, such as inga warren and gillian kennedy obtaining honorary contracts to enable ongoing neonatal unit input and contact. in response to the pandemic, we have tried to adapt our teaching methods and now deliver fine 2 courses online. the adaptation of fine 2 for remote teaching has been far easier than the current project of preparing fine 1 (foundation toolkit) for online accessibility. that said, this is also nearly ready to be trialed in the format of shortened lectures with creative solutions to the more practical elements of the course. in some ways the increase in video conferencing has opened possibilities. our developmental group had ground to a halt, not so much due to lack of interest, rather more to do with staff availability to attend and participate. now staff can join in wherever they are with the meetings timed to suit those who are on shift. we are approaching topics differently, tasking ourselves to explore our current stances and beliefs about subjects. participants who have reservations about areas under discussion take the lead on literature searches into the subject, endeavouring to find a balance in the evidence base. this is proving to open our minds and inspire more inclusive planning. despite the challenges of the past year, we celebrated world prematurity day in fine style! with the theme of ‘superheroes’, staff donned t-shirts (batman and robin clearly ended up wearing two masks each!) and the babies all received a hand crocheted small blanket shaped like a superhero cape. naturally, food was shared and enjoyed with one of the junior doctors making a wonderful cake. this joyous occasion and the recent more positive news about a potential trainer-in-training contributed to an uplifting end to 2020. references: 1. akeyempon a, hicks b, warren i. non-pharmacological pain & stress management: fine 3 quality improvement project. the 31st nidcap trainers meeting, 21-23 october 2020. 2. mendizabal-espinosa rm, warren i. non evidence-based beliefs increase inequalities in the provision of infant and family centred neonatal care. acta paediatrica. 2020, 109(2):314320. doi: 10.1111/apa.14972. 3. tan a, pelone f, arnold s, anderson j, kennedy g, goodmand j. support and information needs of parents and carers of preterm babies requiring respiratory support on the neonatal unit: a qualitative systematic review. journal of neonatal nursing. 2020, 26:93–100. doi:10.1016/j.jnn.2019.11.003. 4. warren i. education in the age of glance. the virtual 2020 stockholm conference on ultra-early intervention, 19 march 2020. inga warren (l) and gillian kennedy are actively involved in research and developement 2022 • developmental observer • 15 m y childhood home in faraway montevideo was a three-minute walk from the large and fancy national golf club. access to the club and lawns was banned for non-members. on sundays, however, the club would open its gates to the public, and city residents were allowed to stroll the fine grass extensions and enjoy the gift of a huge urban green area. as a child, i spent many sundays exploring each and every corner of that seemingly immense green paradise. nevertheless, for me, golf clubs remain emblems of exclusivity, elusiveness and unapproachability. the first words of the target article1 title signal the topics of concern: “culture”, “research” and “communication”. generally, we think “research” in neonatology involves the creation, dissemination, and application of scientific knowledge. in this case, it is scientific knowledge for the benefit of babies receiving care in a neonatal intensive care unit (nicu). but what does “culture” have to do with such science? our target article is authored by seventeen individuals, along with a workgroup of the international neonatal consortium. degl and colleagues take us on a look into nicus scattered across the world and enable us to see some of the workings through three different sets of eyes. each set of eyes belongs to a distinct group essential to the care of premature or medically fragile infants: neonatologists, neonatal nurses, and parents of babies that received care in a nicu. other professions could have been included, but some important lessons were learned from just these three. the data reported in the article came from a survey constructed systematically by a broad-based group using a stepwise consensus methodology. after a comprehensive literature review, the survey designers highlighted an important set of relatively unaddressed research issues: (i) preterm infants are routinely exposed to drugs that have not been adequately researched (for dosage, effectiveness, safety); (ii) investment in neonatal therapeutics tends to be low, and therefore lags persist in the study of new and existing drugs for newborns, as compared to other populations; (iii) there is a huge need to facilitate the conduct of neonatal clinical trials; and (iv) the participation in this kind of trials is perceived by many as potentially risky, burdensome for parents, as well as ethically challenging. then, with cloud-based software, the group administered an elegantly constructed survey to members of each “stakeholder group”, which yielded 323 respondents (52 neonatologists, 188 neonatal nurses, and 83 parents of nicu graduates) from nicus around the world (see table 1 in the article for demographics). they produced an article that is readable, with thoughtful discussion of results, supported by helpful data. the results revealed differences in perceptions of the research process, research knowledge and its applications. how could this be among groups united by a common cause? a surprising number of parents were never or rarely offered meetings with the neonatal team caring for their baby – a setting where it would be natural and effective to share and explain research knowledge as part of the decision-making process. nicu parents have special forms of knowledge pertinent to research training and education programs, and yet, they were almost never consulted or included. over 80% of the physician respondents felt that existing medications are insufficient to meet the medical needs of nicu patients; they cite unsatisfactory off-label use of medications, in untested dosages for babies. parents and even neonatal nurses are relatively unaware of these shortfalls and the need for reform and guidance in appropriate pharmaceutical research. there were numerous other important revelations about the perception of research protections across the participant groups. significantly, there was great unanimity across the groups, in support of the principle that research should be an important component of a nicu’s work. the strengths of this report stem from the salient trends that are highlighted in it and reflected upon in the discussion. indeed, degl et al. provide a mind-opening perspective. various questions are inspired by their article. how have we not contemplated and discussed these issues? why have we been unaware of some of the real s c i e n c e d e s k not an exclusive club anymore dalia silberstein, phd, rn, nidcap trainer israel nidcap training center, meir medical center, israel target article: the culture of research communication in neonatal intensive care units: key stakeholder perspectives. jennifer degl , ronald ariagno, judy aschner, sandra beauman, wakako eklund, elissa faro, hiroko iwami , yamile jackson, carole kenner, ivone kim, agnes klein, mary short, keira sorrells, mark a. turner, robert ward, scott winiecki, christina bucci-rechtweg and international neonatal consortium. journal of perinatology, 2021,41:826–2833. https://doi.org/10.1038/s41372-021-01220-5 doi: 10.14434/do.v15i1.33787 16 • 2022 • developmental observer challenges? what other summits have yet to be conquered in neonatal care that we have not even attempted yet? clearly, neonatal research is needed, as is its broadly-based dissemination. a nicu’s caregiving culture, along with family-centered developmental care, needs continued implementation and fine-tuning. in such a cultural context, input into new research directions will arise. degl et al. preview some new and needed research questions. while the paper raises a variety of topics for reflection and action, i would like to address two extensions of the ideas in the target article that inspired me. envisioning a path beyond informed consent while we can celebrate recent advances in patient involvement in medical research, parental involvement in neonatal research seems to be evolving more slowly.2 informed consent is one aspect of neonatal research in which parental involvement is formally pursued. since the ‘70s parents have been asked to give permission for their babies to be involved in clinical research. notably, the procedures for informed consent rarely have received input from the principal stakeholders, i.e., parents of nicu graduates.3 janvier et al.2 dig into the process of “informed consent”, beyond signing an agreement to participate. they emphasize the need to integrate parents in the review of procedures for informed consent and describe instances in which parental input improved how parents were approached for participation of their infants in research. they also identify further ways in which parents can be be integrated – from setting research priorities to analyzing and presenting results. bourque et al.4 echo and extend these messages in their discussion of activities performed by resource parents in neonatology, and outline those activities where resource parents may be integrated to optimize research. shen and collaborators5 note that researchers tend to restrict parental input to “later” stages of research, after the study focus has been finalized. they too, provide recommendations for engaging parents in research, and strongly advocate for the enhancement of research that is acceptable and relevant for the population it is intended to serve. visibility and clarity of researchrelated information degl et al.1 advocate for involving the “natural stakeholders” (namely, nurses and families) in nicu research in all stages of the research process. they see neonatal nurses as a crucial interface between families and neonatal research endeavors. i emphasize the potential of increased parental involvement, as i believe parents in the nicu remain especially in need of advocacy. fragile infants have fragile parents. but such parents are accessible and responsive. it is with great respect and admiration that we read a family’s testimony published in the most recent developmental observer,6 illustrating vividly how straightforward the enrollment process can be when a study’s objectives resonate with the values and potential benefits they envision for their child. nevertheless, families might also experience profound dilemmas regarding enrollment.3 appropriately, we professional caregivers – each of us in our diverse roles should be constantly aware that information that is clear and obvious to us is not necessarily so for families. degl and colleagues identified the need for guidance in communicating with parents (and with nurses) about clinical trials, noting that education about research underlies effective communication more generally. questions about “what should we talk about with families?” often concern me, as there is much we need to discuss during an infant’s hospitalization. how much information can be handled by a parent in the nicu? it may seem daunting to add discussions of research to the topics we already address with families in the nicu. here is a major lesson of “the culture of research communication . . .”: communicating about research brings benefits. we move beyond the old and well known informed consent, towards a broader approach that advocates for parental involvement and engagement of a dramatically different kind. there are myriad benefits. parents are empowered to parent. staff are united and integrated. barriers are broken. inclusion reigns over exclusion. final thoughts where do we go from here? as a relatively young discipline, neonatology has promising opportunities ahead. research is needed to support and enhance neonatal clinical practices. in recent years, we have witnessed how the increasing involvement of parents in their infant’s care improves the care we deliver in the nicu. neonatal research may be our next “port of entry” into the advancement of our collaboration with families. this path is being envisioned for us by others.1,2,5,7 imagine a culture of care that strives for more collaborative relationships among all the involved parties. recall many of the parents you have known; dream of their involvement in redesigning research documents, developing research materials, prioritizing research topics, supporting recruitment and collection of data, coauthoring scientific articles, taking part in research committees, co-presenting at professional meetings (see pyramid of complexity, presented in figure 1 in janvier at al., 2019).2 2022 • developmental observer • 17 envision inclusiveness and collaboration, both in caregiving and in research. there is a view that can elevate and respect aspects of exclusivity. at times, “exclusivity” implies refinement or the privilege of high quality. but degl and colleagues clarify the toll of exclusivity. at its root, exclusivity implies exclusion – denial of access. the future is already knocking at our doors. it is time. the exclusive golf club should be fully opened to all. acknowledgements: i am grateful to jeff alberts, phd, for his thoughtful and invested support in the editing and organization of my manuscript. and to ita litmanovitz, md, for suggesting thought-generating bibliography for my writing. references 1. degl j, ariagno rl, beauman s, eklund w, faro e, et al. the culture of research communication in neonatal intensive care units: key stakeholder perspectives. journal of perinatology; 2021, 41:826–2833. https://doi. org/10.1038/s41372-021-01220-5 2. janvier a, bourque cj, dahan s, robsonh k, barrington kj, on behalf of the partenariat famille (paf) team. integrating parents in neonatal and pediatric research. neonatology. 2019,115:283–291. doi: 10.1159/000492502 3. janvier a, farlow b. the ethics of neonatal research: an ethicist’s and a parents’ perspective. seminars in fetal & neonatal medicine. 2015, 20:436-441. doi:https://doi. org/10.1016/j.siny.2015.10.003 4. bourque cj, dahan s, mantha g, robson k, reichherzer m, janvier a. improving neonatal care with the help of veteran resource parents: an overview of current practices. seminars in fetal & neonatal medicine. 2018, 23:44-51. https://doi.org/10.1016/j. siny.2017.10.005 5. shen s, doyle-thomas k, beesley l, karmali a, williams l, tanel n, mcpherson ac. how and why should we engage parents as co-researchers in health research? a scoping review of current practices. health expectations. 2016, 20:543–554. doi: 10.1111/ hex.12490 6. persson pettersen m, persson a, klemming s. nidcap from a parent’s perspective. developmental observer. 2022, 15(1):1-3. doi:10.14434/do.v15i1.33785 7. gill m, bagshaw sm, mckenzie e, oxland p, oswell d, boulton d, niven dj, potestio ml, shklarov s, marlett n, stelfox ht; critical care strategic clinical network. patient and family member-led research in the intensive care unit: a novel approach to patientcentered research. plos one. 2016, 5;11(8):e0160947. doi: 10.1371/journal.pone.0160947. pmid: 27494396; pmcid: pmc4975402. nidcap federation international board of directors and staff 2021–2022 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com maria lopez maestro, md, phd nidcap trainer hospital universitario 12 de octubre nidcap training center email: mariamaestro@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard. edu 2025 • developmental observer • 17 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 aims the fine program (family and infant neurodevelopmental education) is a very useful tool to improve personal practice in the application of the developmental centered care model and nidcap. in 2021, fine 2 training started in sant joan de déu hospital in barcelona. as part of this training, trainees were asked to answer a questionnaire on the practice of developmental care in their own centers. included is the ‘perception of a professional’s stress when performing a series of infant care and procedures. we aimed to analyze differences between the perception of the degree of self-stress by a group of professionals when performing usual procedures and care before and after their fine 2 training. methods scores reported by the 22 trainees from one center for each item in their workbook were analyzed. the different variables have a rating scale between 1 and 5 with 1 being minimum stress and 5 being maximum stress. from september 2021 to june 2024, 22 students (15 neonatal nurses, 2 nurse assistants and 5 neonatologists) were trained in fine 2 at our nidcap center. differences in average stress levels between both groups were compared using student's t-test. significance set at p <0.05. results average, standard deviation and statistical significance shown in bold of each item is shown in the table below. conclusion and relevance for nidcap our aim was to make professionals more aware of and sensitive to the stress caused to newborns by most of the routine care. in particular, cpap mask replacement and bottle milk feeding were the procedures in which statistically significant differences were observed in trainee’s perception before and after fine 2 training. analysis of changes in stress perception before and after fine 2 training riverola a, rodriguez n, moreno m, agut t, troyano mj, cervantes r, morillo a neonatal unit. sant joan de déu hospital. barcelona. spain doi: 10.14434/do.v18i1.40891 procedure professional’s stress before fine 2 professional’s stress after fine 2 n p diaper change 3.27+/1.2 3.5 +/-1.1 22 0.25 remove baby unwrapped from incubator 4 +/ 0.9 4.14+/0.8 21 0.37 remove baby wrapped from incubator 3.3 +/ 0.9 3.3+/1 22 0.56 weighing 3.3+/-1 3.1+/-0.8 21 0.71 mouth aspiration 2.9+/-1.3 3.3+/-1.3 22 0.15 peripheral intravenous access 3.6+/-0.9 3.8+/-0.8 21 0.16 eye cleaning 2.1+/-1.4 2.7+/-1.4 22 0.11 cpap mask placement 3.3+/-0.8 4+/-0.8 21 0.002 nasogastric tube insertion 2.5+/-0.9 2.9+/-1.2 21 0.1 bottle milk feeding 1.5+/-0.6 2.2+/-1.1 21 0.01 rop screening 4.1+/-1 4.1+/-1 19 0.46 thoracic or cardiac ultrasound 2.3+/-0.9 2.7+/-1 19 0.08 10 • 2022 • developmental observer a s early as 1974, it was reported that a deviant suck was a sign of neurological issues.1 hill and volpe reported in 1981 that, difficulty with neonatal sucking has been described as an early indicator of neurologic abnormalities.1 typical sucking in the infant has been well described in the literature. it is generally accepted that, in the preterm infant, the immature pattern is characterized by short bursts of three to five sucks followed by a pause of equal duration. in the term infant, there is a continuous sucking burst of 10-30 sucks per burst with an average ratio of one suck-one swallow-one breath.2 in both cases, the infant is comfortable with coordinated respiration while feeding occurs effortlessly. when an infant is unable to coordinate sucking, swallowing, and breathing in a rhythmical and comfortable fashion, the suck pattern presents as disorganized.3 in this case it is usually caused by the infant’s inability to maintain adequate respiration while also sucking and swallowing. such infants may experience apnea or oxygen desaturation during feeding.4 if feeding persists, the infant may show signs of stress such as finger splay, head turning, widening of the eyes, extension of the limbs, arching backward, or any of the many other behaviors indicative of distress. it is important for the feeder to recognize these signs of stress in the infant, to respond quickly to alleviate the cause of stress which will calm the infant, and to assure feeding is a pleasurable experience.5 the neonatal oral motor assessment scale (nomas) is a tool designed to assess neonatal sucking and distinguish between disorganized and dysfunctional feeding. a recent study reported that infants who lack coordination of suck-swallow-breathe and who also experience stress during feeding, as based on the nomas, have a longer transition time to full oral feedings than those infants who are not stressed during feeding. infants with a disorganized suck who are stressed take 22 days to transition to full oral feedings, while those with no stress can transition in six days.6 dr. xianhong zhang and colleagues in the department of neonatology at the children’s hospital of chongqing medical university in chongqing, china used the nomas to identify abnormal sucking patterns in moderately and late preterm infants and to ascertain the relationship between these patterns and neurodevelopmental outcome at six months corrected age. this study did not enroll infants with neurologic disorders, so no infants were classified as having a dysfunctional suck. infant feeding was classified as either normal or disorganized based on the nomas. the researchers reported that infants who demonstrated stress signs per the nomas, that is, incoordination of suck, swallow, and respiration which result in nasal flaring, head turning, and extraneous movement, along with arhythmical jaw and tongue movements, were at risk for adverse neurodevelopmental outcomes at six months corrected age.7 in addition to infants who present with both a disorganized suck and stress per the nomas, it is also possible to predict later developmental outcomes for infants who present with a dysfunctional suck.8 this suck pattern can be identified by abnormal movements of the tongue and jaw that occur during active sucking and that are never typical. these movements include the lack of a central tongue groove compared to a cupped tongue with a central tongue groove. the tongue instead presents as either flattened/flaccid with an absent tongue groove or is retracted with the posterior tongue humped against the palate.8 during a dysfunctional suck, the jaw may demonstrate an excessively wide excursion pulling the tongue away from the nipple and interrupting the intra-oral seal that is formed between the tongue and the palate. another characteristic of a dysfunctional suck occurs when the jaw is unable to make an adequate downward movement due to a restriction of movement at the temporal-mandibular joint that inhibits smooth downward movement of the jaw. this restriction is secondary to the posterior humping of the tongue against the palate. in all cases when a dysfunctional suck is diagnosed, there is a neurological issue that has been identified or soon will be identified.9 these may include diagnoses such as, grade iii intraventricular hemorrhage (ivh),9 periventricular leukomalacia (pvl), perinatal hypoxic ischemic encephalopathy (hie), seizure disorder, hydrocephalus, meconium aspiration, meconium staining, congenital anomalies, placenta abruptio with decreased muscle tone, chromosomal abnormalities, and neonatal encephalopathy of unknown etiology, to name a few. it has been reported that in addition to an association with dysfunctional sucking, severe ivh negatively impacts the suck-swallow-breathe rhythm. the independent effect of neurological injury in the form of ivh on early neonatal feeding coordination suggests that a closer analysis of feeding may reflect and predict neurological sequelae.9 early diagnosis of the neonatal suck pattern is important because of the complexity of the neuronal network needed to suck and neuroplasticity in infancy. because of this, the skill of sucking has the unique ability to give insight into areas of the brain that may be damaged either during or before birth.10 in 2009, it was hypothesized that a standardized instrument predictability of neonatal sucking for later developmental outcomes marjorie meyer palmer ma, nlp, cc-slp, neonatal/pediatric feeding specialist, speech-language pathologist, founder/director, nomas® international doi: 10.14434/do.v15i1.33788 2022 • developmental observer • 11 for neonatal sucking could offer a cost-effective early screening tool for preterm infants at greatest risk for developmental delay,11 and the nomas provides such a tool. the nomas can be administered at the bedside within two to three minutes by the trained examiner observing a routine feeding offered by the assigned caregiver in the intensive or special care nursery. the examiner first observes the non-nutritive suck during the first burst, first pause, and second burst to rule out sensory conditions such as habituation and perseveration. this is followed by a two-minute observation of nutritive sucking starting once the nipple is adequately and properly placed in the infant’s mouth. the number of sucks per burst and the type of pattern (continuous or burst-pause) is observed and recorded. a disorganized sucking pattern occurs when an infant exhibits too much variability in the number of sucks per burst (sucking bursts have between 5-10 sucks per burst), or the infant demonstrates an inconsistent suck-swallow-breathe ratio. the nomas may also be used for breast feeding infants but will require the examiner to spend more time observing the infant because of the variability of flow that occurs with breast feeding.12,13 nomas-based assessments for neonatal feeding performance have been considered helpful tools to predict neurodevelopmental outcome at six and 12 months corrected age.14 the nomas has been identified as the only neurobehavioral assessment that specifically measures preterm sucking behavior.15 slattery reports in a review article that, early sucking and swallowing measures predicted neurodevelopmental outcome in later infancy in five of the six studies reviewed.16 thus studies show that sucking and swallowing disorders in early infancy serve as potential markers of neurodevelopmental problems and abnormal sucking patterns may reflect neurologic developmental issues in preterm infants.17 the nomas provides predictability for later developmental outcomes for both disorganized and dysfunctional sucking patterns and is a screening tool that can be administered by observation at the bedside by a trained examiner. trained examiners demonstrate reliability in the administration and scoring of the nomas to distinguish between disorganized and dysfunctional sucking patterns to assure the subsequent intervention strategies, therapeutic techniques, and treatment plans are appropriate. currently there are nomas licensed professionals in 46 u.s. states and 40 foreign countries. references 1. hill al, volpe jj. disorders of sucking and swallowing in the newborn infant: clinicopathologic correlations, progress in perinatal neurology. philadelphia. wb saunders, 1981,157-181. 2. gryboski jd. suck and swallow in the premature infant. pediatrics. 1969, 43(1):96-102. pmid: 5764074. 3. palmer mm, crawley k, blanco ia. neonatal oral-motor assessment scale: a reliability study. journal of perinatology. 1993, 13, 28-35. 4. hanlon mb, tripp jh, ellis re, flack fc, selley wg, shoesmith hj. deglutition apnoea as indicator of maturation of suckle feeding in bottle-fed preterm infants. developmental medicine and child neurology. 1997, 39(8):534-42. doi: 10.1111/j.1469-8749.1997. tb07482.x. 5. als h, lawhon g, duffy fh, mcanulty gb, gibes-grossman r, blickman jg. individualized developmental care for the very low-birth-weight preterm infant. journal of american medical association. 1994, 272 (11): 853-858. 6. yi yg, oh bm, shin sh, shin jy, kim ek, shin hi. stress signals during sucking activity are associated with longer transition time to full oral feeding in premature infants. frontiers in pediatrics. 2018, 12, (6):54. doi: 10.3389/fped.2018.00054.  7. zhang x, zhou m, yin h, dai y, li y. the predictive value of early oral motor assessments for neurodevelopmental outcomes of moderately and late preterm infants. medicine (baltimore). 2017, 96(50):e9207. doi: 10.1097/md.0000000000009207. 8. palmer mm, heyman mb. developmental outcome for neonates with dysfunctional and disorganized sucking patterns: preliminary findings. infant-toddler intervention. the transdisciplinary journal. 1999, 9, (3): 299-308. 9. gewolb ih, sobowale bt, vice fl, patwardhan a, solomonia n, reynolds ew. the effect of severe intraventricular hemorrhage on the biorhythms of feeding in premature infants. frontiers in pediatrics. 2021, 23, (9):673152. doi: 10.3389/fped.2021.673152. 10. shandley s, capilouto g, tamilia e, riley dm, johnson yr, papadelis c. abnormal nutritive sucking as an indicator of neonatal brain injury. frontiers in pediatrics. 2021, 12;(8):599633. doi: 10.3389/fped.2020.599633. 11. medoff-cooper b, shults j, kaplan j. sucking behavior of preterm neonates as a predictor of developmental outcomes. journal of developmental and behavioral pediatrics. 2009, 30(1):16-22. doi: 10.1097/dbp.0b013e318196b0a8.  12. palmer mm. identification and management of the transitional suck pattern in premature infants. journal of perinatal and neonatal nursing. 1993, 7(1):66-75. doi: 10.1097/00005237-199306000-00009. 13. palmer mm. developmental continuum of neonatal sucking performance based on the nomas (neonatal oral-motor assessment scale). developmental observer. 2015, 8(1): 11-15. 14. tsai sw, chen ch, lin mc. prediction for developmental delay on neonatal oral motor assessment scale in preterm infants without brain lesion. pediatrics int. 2010, 52(1):65-8. doi: 10.1111/j.1442-200x.2009.02882.x. 15. slattery j. preterm sucking behavior and later neurodevelopment. developmental medicine and child neurology. 2017, 59, (8): 784-785. 16. slattery j, morgan a, douglas j. early sucking and swallowing problems as predictors of neurodevelopmental outcome in children with neonatal brain injury: a systematic review. developmental medicine and child neurology. 2012, 54(9):796-806. doi: 10.1111/j.14698749.2012.04318.x 17. poore ma, barlow sm. suck predicts neuromotor integrity and developmental outcomes. perspectives speech science orofacial disorders. 2009; 19: 44-51. doi.org/10.1044/ ssod19.1.44 i really like the new layout of the developmental observer my compliments for all the work and the professional appearance. there is a lot of content and i like the use of quotes from people in between the articles. – monique oude reimer sophia nidcap and apib training center it was really a pleasure to read the article written by jeff alberts and his review regarding “the effect of gentle human touch during endotracheal suctioning“ from the last issue of the do. i really like the way he analysed it. it is not only his excellent english and the ability to write in an interesting way, but it is the way he sees and thinks about the subject. i was amazed how he referred to my review. i would like to express my thanks. – ita litmanovitz israel nidcap training center letters to the editor continued on p. 18 16 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aims sustained and intense noise exposure in the neonatal intensive care unit (nicu) may be a critical negative influencer on neurodevelopmental outcomes in preterm infants1; often associated with stress responses, alteration in physiological stability, sleep deprivation, autonomic changes, alteration in endocrine and metabolic response, and hearing deficits.2,3 varied strategies including architectural design, special noise-alert or sound-reduction devices, and staff education were reported with inconclusive outcomes.4 nevertheless, the potential influence of music therapy (mt) interventions on noise reduction are missing. this study aimed to evaluate the effect of mt on noise levels in the nicu and to compare the specific effects of individual mt (imt) and environmental mt (emt). methods this case-control study was conducted in a level iii nicu. noise levels were recorded simultaneously from two open bay rooms, one with mt and the other without. each room included a maximum of 10 infants. mt sessions were carried out for approximately 45 minutes with either imt or emt, implemented according to the first sounds: rhythm breath and lullaby (rbl) model.5 noise production data were recorded for 4 hours, on 26 occasions of emt and imt, and analyzed using r software, version 4.0.2. the analysis compared the ambient noise level in the open bay rooms, and the signal-tonoise ratio (snr); a measure that compares the level of signals to background noise. when higher than 0db, the snr can indicate if there was more signal than noise. results overall average equivalent continuous noise level (leq) were lower in the room with mt as compared to the room without mt (53.1 (3.6) vs. 61.4 (4.7) dba, p=0.02, d=2.1 (ci, 0.82, 3.42). imt was associated with lower overall leq levels as compared to emt (51.2 vs. 56.5 dba, p=0.04, d=1.6 (ci, 0.53, 1.97). the lowest sound levels with mt, occurred approximately 60 minutes after the mt started (46 ± 3.9 dba), with a gradual increase during the remaining recording time, but still significantly lower compared to the room without mt. signal to noise ratio (snr) was higher (18.1 vs. 10.3 dba, p=0.01, d=2.8 (ci, 1.3, 3.86)) in the room with mt as compared to the room without mt. relevance to nidcap current strategies most often used to reduce perceptual sound levels are insulation and isolation. these approaches fall short in that they only address reduction of stressors, but do not contribute towards creating a developmentally appropriated auditory stimulation. accordingly, the current study relates to core components of the nidcap model, namely, modulation of stress in the nicu, infants' sensorial experiences and addressing regulation needs of the nicu's physical environment.6 conclusions integrating mt modalities such as imt and emt in an open bay nicu room may help in reduction of noise levels. both mt modalities resulted in higher snr compared to the control group, which may indicate that they are meaningful for the neurodevelopment of these preterm infants. references 1. pineda rg, neil j, dierker d, et al. alterations in brain structure and neurodevelopmental outcome in preterm infants hospitalized in different neonatal intensive care unit environments. journal of pediatrics 2014; 164: 52-60.e2. 2. health c on e. noise: a hazard for the fetus and newborn. pediatrics 1997; 100: 724–727. 3. philbin mk. the sound environments and auditory perceptions of the fetus and preterm newborn. in m filippa, p kuhn, & b westrup (eds), early vocal contact and preterm infant brain development: bridging the gaps between research and practice. 2017; 91–111. 4. casavant sg, bernier k, andrews s, et al. noise in the neonatal intensive care unit: what does the evidence tell us? adv neonatal care; 17, https://journals.lww.com/ advancesinneonatalcare/fulltext/2017/08000/noise_in_the_neonatal_intensive_care_ unit__what.8.aspx (2017). 5. loewy j, stewart k, dassler am, et al. the effects of music therapy on vital signs, feeding, and sleep in premature infants. pediatrics 2013; 131: 902–918. 6. westrup b. newborn individualized developmental care and assessment program (nidcap) family-centered developmentally supportive care. early human development 2007; 83: 443–449. music therapy intervention in an open-bay neonatal intensive care unit room is associated with less noise and higher signals: a case-control study doi: 10.14434/do.v16i1.35777arnon s1,2*, epstein s3, ghetti c4, bauer-rusek s1,2, taitelbaum-swead r5 , yakobson d1,6 1department of neonatology, meir medical center, kfar saba, israel , 2sackler faculty of medicine, tel aviv university, tel aviv, israel, 3school for creative arts therapies, university of haifa, haifa, israel, 4gamut – the grieg academy music therapy research centre, university of bergen, bergen, norway, 5department of communication disorders, ariel university, ariel, israel, 6music therapy department, aalborg university, aalborg, denmark 2 • 2024 • developmental observer in this edition, we explore the powerful theme of reflection, presenting articles that prompt thoughtful consideration of both clinical practice and personal experience. joy browne offers a heartfelt reflection on the pioneering work of stanley graven in newborn care, shedding light on his lasting impact on the field. similarly, emily fawaz shares a deeply personal account of her time in the nicu with her twin boys, encouraging readers to reflect on how caregiving can shape both outcomes and experiences. the theme of reflection extends to jeff alberts science desk column, where readers are invited to contemplate the role of the cerebral cortex in developmental care, a topic that challenges us to rethink traditional approaches. inga warren and kaye spence further contribute by providing a practical model for integrating reflection into the care of newborns and their families, offering valuable tools for everyday practice. as we look ahead to the upcoming nidcap trainers meeting in toulouse, i encourage you to embrace reflection as an integral part of the learning process. the program promises to be dynamic, and the networking opportunities will be invaluable. participants could consider keeping a journal to capture your insights, ensuring that you can apply your reflections to enhance your practice upon returning home. kaye spence am facnn senior editor – developmental observer adjunct associate professor australasian nidcap training centre/ university of western sydney editorial jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap and apib master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and ment orship, and awareness. deborah has authored and co authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board cover image: ana and tiago reading to henrique in a nicu in portugal. used with permission. doi 10.14434/dov17i3.39752 embracing reflection 18 • 2022 • developmental observer do preemie babies need their “cup of coffee” each day to improve feeding skills at breast or bottle when they are adjusted to 34 weeks gestation or above? caffeine is a common pharmacologic treatment for apnea, and for extremely premature infants who are born at 24, 25, 26 weeks gestation,1 continuing caffeine may be just what the doctor ordered. just like you and i need our coffee in the morning to function, does an extremely premature infant benefit from their “coffee” through their daily dose of caffeine through the adjusted age of 34-37 weeks? this is the time they are working on coordination of suck/swallow/breathe, improved intake and maintaining stable vital signs during feeding experiences at the breast or bottle. research shows that caffeine affects respiration in the following ways: increased minute ventilation, improved carbon dioxide sensitivity, decreased periodic breathing, and decreased hypoxic depression of breathing.2 if a baby maintains the intervention of caffeine while setting the foundation for feeding skills, would they be able to maintain stable vital signs, improve organization of behavior, and improve intake in a shorter amount of time? therefore, decreasing time spent in the hospital? the literature also shows that caffeine is safe and effective, but the therapeutic window for use has not been established. eichenwald3 suggests that a baby be free of apnea/bradycardia events off positive pressure for five to seven days or at 33-34 weeks pma. but could the baby continue caffeine support while working on suck/swallow/breathe coordination at breast and/or bottle, which may begin around 34 weeks pma? if babies are given the support of caffeine during this time, when an additional activity, such as breast and bottle feeding, is being presented, it may improve the positive experience of feeding and lead to improved intake and the main goal of full oral feeding for discharge home. the transition to oral feeding requires that a baby demonstrates physiological stability. to assist the infant, we need to understand how they maintain optimal oxygenation during oral feeding and how they can self-regulate their oxygen status.4 swallowing momentarily interrupts breathing, which requires work for organization with the suck/swallow/ breathe pattern. could caffeine support the organization needed to achieve full oral feeds more quickly? many authors discuss the use of caffeine with suggestions to be proactive, rather than reactive to apnea episodes at rest and during oral feeds. some suggest that caffeine may be needed longer for the extremely premature infant to support the developing lung. it is discussed that the common practice is to discontinue caffeine between the 33-34 pma. it was noted that apnea still occurs and is not trivial in the 35-39 pma. it is suggested that continuing caffeine past 35 weeks is a possible treatment plan that could have a significant clinical impact. however, physicians seem reluctant to keep an infant on caffeine past 34 weeks with concern that it may delay discharge. it may be possible that staying on caffeine longer could in fact, speed up discharge. if de-saturations are closely observed and recorded, the need to extend the use of caffeine will become does caffeine use support suck/swallow/breathe coordination at breast and bottle, and lead to an earlier discharge? brenda takata, otr/l, mha, swc, nlp emanate health queen of the valley hospital, los angles, california doi: 10.14434/do.v15i2.34362 infant bottle feeding. us ed w ith p er m is si on 2022 • developmental observer • 19 evident. if the medication was not discontinued until three to five days post last incident of a desaturation, the baby has support while feeding, and could in fact discharge from the unit sooner avoiding the need to prolong hospitalization to monitor for desaturations to ensure that the baby is stable. caffeine’s favorable effect on cardiorespiratory physiology in stabilizing systemic and cerebral hemodynamics and its capacity to mitigate hypoxic respiratory depression may play a part in neuroprotection.5 kumar and lipshultz5 suggest that the therapeutic window for caffeine will need continued research to understand the favorable outcomes that may be achieved for premature infants. dabin2 discussed the wide variation in discontinuing caffeine, and the need for more studies to assist with the balance of avoiding apnea episodes and delaying discharge if caffeine is not discontinued soon enough. along my journey as an occupational therapist in the nicu, i had the privilege of working with two wonderful premature babies born at 24.6 weeks gestation and 24.4 weeks gestation. they were similar weight, 715 grams, and 760 grams. both needed oxygen support and caffeine support. my focus was on the caffeine support and how it may assist with improved success with breast and bottle feeding. baby a, was born at 24.6 weeks gestation and had caffeine discontinued at 36.3 weeks. at that time, we only expected the baby to attempt to bottle feed every other feeding due to respiratory effort made during feeds, and difficulty with completing his feeds. he always seemed to need to “catch his breath” and would take 35-70% of his feeds, but remember, he was only trying to nipple feed every other feeding. he was too tired the rest of the time. baby b, was born at 24.4 weeks gestation and had the caffeine discontinued at 37.6 weeks gestation. baby b was able to take advantage of the benefits of caffeine for 10 days longer than baby a. at the time that the caffeine was discontinued for baby b, he was consistently taking above 50% of his feeds and was bottle feeding on a cue based schedule and showing an appropriate coordination of suck/swallow/breathe. baby a was discharged home at 42.5 weeks and had a gastrostomy tube placed due to the inability to maintain enough energy to complete oral feeds. baby b was discharged home at 40.5 weeks, taking full oral feeds. when looking back at the journeys of these two babies, it may have been advantageous for baby a to continue caffeine longer as he continued to improve with breast and bottle feeding skills. it may have assisted him to have a better foundation for coordinating suck/swallow/ breathe during feeding if the discontinuation of caffeine was considered when the baby was above 35 weeks corrected age, on cue based feeds, and taking 50% or more of each feeding orally. and, most importantly, continuing caffeine if the baby had experienced any desaturations or bradycardias in the last three to five days. further studies would benefit outcomes and help to establish guidelines for using caffeine and considering feeding skills and intake at the time of discontinuing the support that caffeine offers.6 a solution may be in correctly and efficiently charting and recognizing a desaturation and/or bradycardia and keeping a close eye on the baby’s stability when nipple feeding and at rest. references: 1. abdel-hady h, nasef n, shabaan ae, nour i. caffeine therapy in preterm infants. world j clin pediatr. 2015, 4(4):81-93. doi: 10.5409/wjcp.v4.i4.81. 2. ji d, smith pb, clark r, zimmerman k, laughon m, ku l, greenberg r. wide variation in caffeine discontinuation timing in premature infants. journal of perinatology, 2020, 40, 288-293. doi: 10.1038/s41372019-0561-0. 3. eichenwald ec: committee on fetus and newborn, american academy of pediatrics. apnea of prematurity. pediatrics. 2016, 137(1). doi: 10.1542/peds.2015-3757. 4. thoyre sm, carlson jr. preterm infants’ behavioural indicators of oxygen decline during bottle feeding. journal of advanced nursing. 2003, 43(6):631-41. doi: 10.1046/j.1365-2648.2003.02762.x. 5. kumar vhs, lipshultz se. caffeine and clinical outcomes in premature neonates. children (basel). 2019 oct 24;6(11):118. doi: 10.3390/children6110118.  6. moschino l, zivanovic s, hartley c, trevisanuto d, baraldi e, roehr cc. caffeine in preterm infants: where are we in 2020? erj open research. 2020, 6(1):003302019. doi: 10.1183/23120541.00330-2019. “swallowing momentarily interrupts breathing, which requires work for organization with the suck/swallow/ breathe pattern.” thank you for the new look issue of the developmental observer. i particularly enjoyed the first article “nidcap from a parent’s perspective” it’s incredible to hear that baby benjamin was a week old before he was even put in his bed! and the way the nicu/health system is set up to have them progress to a family room and the neonatal home care is inspirational. – catherine piasini clinical nurse specialist australasian nidcap training centre letters to the editor (continued from p.11) 14 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background/significance it has been optimistically, yet incorrectly, proposed that healthy preterm infants without major complications eventually catch up developmentally to term infants. parental touch, especially during skin-to-skin contact (ssc) has the potential to reduce adverse consequences of prematurity. oxytocin is a neuropeptide that stimulates bonding and parenting behaviors by a bio-behavioral feedback loop. mothers and fathers with increased oxytocin levels have more reciprocity and synchronicity in their interactions with their infants. evidence suggests that neurobiologically, oxytocin directs the young infant to preferentially select species-specific social stimuli to form dyadic attachments. oxytocin is considered critical in the experience-dependent plasticity underpinning auto-regulated functioning in response to experiences during sensitive periods of development. aims the purpose of this research study was to examine salivary oxytocin and cortisol levels related to skin-to-skin contact (ssc) to demonstrate better infant neurobehavioral functioning using the neonatal network neurobehavioral scale (nnns). methods a randomized cross-over design study was conducted in the neonatal intensive care unit (nicu). infant saliva samples for oxytocin and cortisol were collected pre-ssc, 60-min duringssc, and 45-min post-ssc. infant neurobehavioral assessment using nnns was collected prior to hospital discharge. data were analyzed using r version 4,0,3. linear regression models included four predictor variables: salivary oxytocin and cortisol levels after ssc; two measurements for each based on whether the infant was held by the mother or by the father. results a significant inverse relationship was found for infants who were held ssc, with their mothers demonstrating higher oxytocin levels and lower stress summary scores (t= -3.48, p<.003). for these same infants, a significant relationship with higher self-regulatory summary scores (t=2.104, p<.049) was also found. interestingly, infants held ssc by mothers that demonstrated higher cortisol levels also demonstrated higher asymmetrical reflexes summary scores (t=2.413, p<.026). we found that infants held by mothers demonstrating higher cortisol levels (t=2.249, p<.037) also demonstrated similarly high levels with fathers (t=2.156, p<.044) that were also associated with higher infant stress summary scores. there were no significant differences noted between our data and the published normative nnns summary score values identified in figure 1 (lester et al., 2004) for the preterm subset despite mean gestational age (36 1/7) being younger corrected post-menstrual age for participants in the current study at the time of hospital discharge. lester and colleagues reported nnns exams completed at post-menstrual age 42-44 weeks. relevance to nidcap this research explores the bio-behavioral mechanisms that modulate high-risk infants’ behavioral, autonomic, and stress responses utilizing an individualized developmental family-centered care approach. skin-to-skin contact is an evidenced-based holding strategy that increases parental proximity to their infant. this physical proximity allows for a continuously interactive environment that is known to enhance infant physiologic stability and affective closeness between parent and infant. uncovering the neurobiological basis of early parent-infant interaction is an important step in developing therapeutic modalities to increase parent engagement and improve health outcomes. conclusions these findings are an important step in exploring oxytocin as an important biomarker that provides evidence that demonstrates potential improvement in infant neurodevelopmental functioning and competence. the organization of oxytocin availability is critical to the limbic and neocortical systems, and those nervous system structures related to emotion depend on early caregiving experiences. ssc is an intervention that increases oxytocin and decreases cortisol. nurses can use ssc as a strategy to activate oxytocin release to enhance infant neurodevelopmental outcomes. additionally, these findings provide further evidence that neurobehavioral assessments can and should be incorporated into the care of preterm infants to identify an individualized plan of care to support the unique strengths of the infant’s current level of behavioral functioning. statement of financial support the author has no financial relationship with commercial entities to disclose. oxytocin and cortisol release is associated with premature infant neurobehavioral patterns dorothy vittner, phd, rn, faan egan school of nursing and health studies, fairfield university, ct. connecticut children's, hartford, ct doi: 10.14434/do.v16i1.35776 2023 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 acknowledgments this study was supported with funding from the national association of neonatal nurses, american nurses foundation (eastern nursing research society), sigma theta tau international (mu chapter), and the university of connecticut, school of nursing (toner funds). figure 1. neonatal network neurobehavioural scores issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2023. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 12 • 2022 • developmental observer supporting oral feeding in fragile infants (soffi®) is a comprehensive approach to feeding preterm infants and infants with medical comorbidities within the hospital setting and after discharge. it is based on observation of the capabilities of the baby at different neurodevelopmental stages and on caregivers consistently responding appropriately. soffi® uses the concepts of the synactive theory as the foundation for observations, and interventions are based on developmentally supportive care concepts. what is unique about soffi® is it focuses on the neurobehavioral development of feeding, with the neonatal intensive care time period considered as the foundation for all later eating development. the goal of soffi® is to ensure positive eating experiences, based on infant behavioral communication, with the overall goal of improving feeding outcomes in-hospital and after discharge. in a recent post-discharge pilot study of healthy preterm infants who did not exhibit feeding problems while in the nicu, 42% experienced some type of feeding problem.1 this is consistent with a review article by pados and colleagues that revealed the overall prevalence of problematic feeding after nicu discharge and before four years of age was also 42%.2 many programs designed to improve feeding outcomes within the nicu only consider outcomes to discharge. soffi® is the only feeding program that has research supporting improved outcomes both within and after discharge from the nicu.3 initially certified in nidcap in 1993, i have focused on the problem of feeding in nicu settings and the poor feeding outcomes in this population. my experience working in both the nicu, starting in 1990, and in the pediatric feeding clinic led me to wonder whether good intentions within the nicu setting were contributing to feeding problems, even though the feeding problems did not reveal themselves until after discharge. over time and with more insight into the neurodevelopmental aspects of learning to eat, it became clear that many professionals do not consider post-discharge outcomes. infants begin eating reflexively and they discharge from the nicu while eating is still reflexive. soffi® teaches that negative feeding experiences from birth through when the infant is eating volitionally are the reason many infants develop feeding problems once home. if an infant is uncomfortable, out of breath, pushed along, in pain, or overwhelmed every time they eat, they develop ways to avoid eating. in fact, this is a wonderful example of classical conditioning. infants learn to escape and avoid eating, and have low appetite, because eating has been paired with repeated aversive experiences. infants do communicate their experiences during feedings, yet feeders often ignore these signs either out of ignorance or out of a desire to help the baby learn to eat and go home. most literature and staff focus on getting infants to eat sooner and to go home sooner. few focus on eating with better skill with a goal of developing long-term enjoyment of eating. quality leads to quantity and one doesn’t have to be sacrificed for the other. soffi® was developed initially to educate local nursing staff and it has grown into an international training program. soffi® has been used as the training framework for several published studies and abstracts.3-5 these studies have shown it is an effective intervention model for preterm infants as well as term infants who are ill, the same populations typically seen within hospital nicus. statistically significant improvements in outcomes at discharge were shown in these studies, yet more importantly, no adverse effects occurred despite changing the focus to quality feedings. unique to soffi®, significant improvements were found after discharge, including fewer infants who 1) demonstrated feeding problems overall, 2) required feeding therapy, 3) vomited, and 4) arched.3 one study showed that supporting oral feeding in fragile infants: introduction to soffi® erin sundseth ross, phd, ccc-slp president, feeding fundamentals, llc doi: 14434/do.v15i2.34364 on-going consultation in the soffi method pe rm is si on fo r u se in d o o nl y 2022 • developmental observer • 13 more infants with significant co-morbidities who discharged home with a nasogastric tube for supplementation transitioned to full oral feedings by three to five months corrected age.5 soffi® educates the trainee on the importance of parental involvement in feeding and infant care in general, and covers learning theory, including the synactive theory and classical conditioning. all experiences are framed within the concept of homeostasis. by understanding the infant’s communication and responding appropriately to their needs, repeated negative feeding experiences are avoided. this helps the infant build the skills for eating and the desire to eat. parents are the primary feeders from the beginning, and breastfeeding is emphasized as the best and most biologically expected way to feed the infant. most infants in the united states will be both breast and bottle-feeding at hospital discharge. bottle-feeding is associated with more physiological challenges during feedings, so bottle-feeding strategies are provided in soffi® training. soffi® offers in-depth information on the development of feeding. infants are developing the neurological and motor ability to eat all through the preterm period. feeding is the most complex activity they will learn to do. feeding is directly tied to maturation, and research repeatedly shows the average age for reaching full oral feedings is 36.5 weeks gestation, plus or minus two weeks. by understanding the developmental nature of feeding and the influence of medical comorbidities, asking infants to do something too challenging can be avoided. infants develop within windows of time, which is often forgotten with eating. many health professionals want all preterm infants to eat by 32-34 weeks, and often infants are pushed to eat by 36 weeks. the literature is full of articles that suggest infants who are still hospitalized at 36 weeks are behind. in fact, half of infants who are developing typically would be still working on feeding. soffi® training brings the concepts of neurodevelopment, learning, and infant behaviors together to teach trainees how to observe and evaluate feedings, and then how to improve feeding experiences. the methodology uses the neurodevelopmental framework of the baby regulated organization of systems and sucking (bross©).6 all interventions are evidence-based, developmentally appropriate, and family-centered. interventions begin well before oral feeding attempts. staff use algorithms for decision-making, and families learn to be co-regulators of their infant during feedings. a parent education program is currently being piloted as well. soffi® is used for preterm and term infants, hospitalized or at home, with or without medical comorbidities. nurses and therapists who work with these infants in the nicu and after discharge are the primary disciplines trained, although dietitians, lactation consultants, physicians, and nurse practitioners have also completed training. soffi® is used by hospitals to change feeding cultures and by healthcare professionals supporting eating development in infants. as one example, all nicu staff within a large hospital are completing training across a two-year period. the focus is on training as well as system issues with both bedside caregivers and leadership. this hospital is collecting infant, parent, and staff outcome data to explore how changes in the bedside feeding culture improves outcomes. feeding is the “last barrier” to discharge because it requires infants to be able to do everything else, all at the same time. it is naturally the last thing they develop, and when the development of swallowing, airway protection, the gastrointestinal system, and the respiratory system are all understood, the complexity of eating is respected. feeding is so challenging because of the neurological and physical development of the infant. the protective swallowing mechanisms and the physiologic, motor, and behavioral state systems are still developing. when feeders don’t know how to observe and respond appropriately during feedings, infants can be exhausted, cough, choke, gag, experience decreases in heart rate and oxygen saturations, or shut down. by training feeders to not only see with new eyes, but to respond appropriately to the communication of the infant, the goal becomes supporting positive experiences within the current development of the infant. additionally, a shared language and philosophy can be taught to the family who are the most important people in their infant’s life and should be the primary feeders. what healthcare professionals teach, and model is what the parents learn. if parents are taught to ignore their infant’s behaviors and to focus on the task of feeding enough volume, the challenges during feedings continue well after discharge. soffi® shifts the trajectory of feeding to develop a strong foundation for life-long eating. references 1. robinson l, heng l, fucile s. investigating the developmental trajectory of long-term oral feeding problems in ‘healthy’ preterm infants. developmental neurorehabilitation. 2022, online. doi: 10.1080/17518423.2021.2011975 2. pados bf, hill rr, yamasaki jt, litt ls, lee cs. prevalence of problematic feeding in young children born prematurely: a meta-analysis. bmc pediatrics. 2021, 21:110. doi:org/10.1186/s12887-021-02574-7 3. horner s, simonelli am, schmidt h, cichowski k, hancko m, zhang g, ross es. setting the stage for successful oral feeding: the impact of implementing the soffi feeding program with medically fragile nicu infants. journal of perinatal & neonatal nursing. 2014, 28:59-68. doi:10.1097/jpn.0000000000000003 4. hanin m, nuthakki s, malkar mb, jadcherla sr. safety and efficacy of oral feeding in infants with bpd on nasal cpap. dysphagia. 2015, 30:121-7. doi:10.1007/s00455-0149586-x 5. horner s, ross e, hancko m, simonelli am, cichowski k, schmidt h. the impact of the soffi on feeding outcomes of medically fragile nicu infants. in the physical and developmental environment of the high risk newborn. 2014, st. petersburg, fl. 6. browne j, ross e. eating as a neurodevelopmental process for high risk newborns. clinics in perinatology. 2011, 38:731-43. doi: 10.1016/j.clp.2011.08.004 “feeding is the ‘last barrier’ to discharge because it requires infants to be able to do everything else” 2022 • developmental observer • 25 n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 jacques sizun, md centre hospitalier universitaire de toulouse| chu toulouse service de néonatologie during the 32nd annual nidcap trainers meeting, sari goldstein ferber, phd, from bar ilan university, israel, presented an interesting reflection on the potential impact of nidcap on the homeostatic regulation of hypothalamic (hpa) axes. she presented three axes that are regulated by melatonin, cortisol and oxytocin. they play important roles in the maturation of circadian rhythms, the modulation of stress, and the relationship and bonding. the behavioral observations using the synactive theory framework are focused on the management of the wake/sleep states, and on the permanent balance (and imbalance) of the stress-induced behaviors. the baby’s strategies for self-regulation and the co-regulation by parents are important to manage stress behaviors. recommendations are always oriented toward attachment and bonding support. this presentation could have three impacts: • the first impact is on my own vision of the newborn, their development and care. it is very important not to stay in our “ivory tower”, being too comfortable and secure can isolate us from the outside world. confronting our own theoretical models with advances in science and medicine is an exercise that is sometimes intellectually difficult but very nurturing. • the second impact concerns our healthcare professional colleagues who may not be convinced by our approach to care. the psychoneuroendocrine perspective can be a gateway to nidcap for them, as it has been observed for other fields of newborn care such as: pain (close link between developmental care practices and non-pharmacological treatments); palliative care (same philosophy of holistic, individualized, family-centered care); and/or breastfeeding support. • the third impact could be for research. using tools from other fields of clinical research to explore the impact of nidcap appears exciting. conclusion: connection is essential! jim helm, phd director emeritus, carolina nidcap training center when i attend a conference, and in particular, the nidcap trainers meeting, i hope to be re-energized around the mission and goals of the nidcap approach and… to see old friends who have shared goals; to learn about new ideas, research and applications; and to be inspired. this day did not disappoint me, rather it brought energy, reflection and the hard-to-come-by inspiration. the pearls of wisdom segments of the meeting have members sharing personal experiences that have helped shape their caring and offer participants a unique opportunity to join a colleague’s personal perspective. andrea nykipilo, rn and gretchen lawhon, phd, rn, faan provided a wonderful start to the day with thoughts on how the nidcap approach has opened one to be in the moment and how learning imparts a sense of duty to teach others. perfect for nidcap work. dr als’ keynote address built from that setting-of-thestage as she embraced the meeting’s theme – always together – and examined it from within the uncertainties and cautiousness of the pandemic. discussing the critical importance of “being together” during critical times, whether during a pandemic or negotiating the challenges of being admitted to an nicu. no matter, human togetherness is supportive, facilitates growth, development and healing and especially for the fragile infants and traumatized families of the nicu. the nfi membership meeting, presided over by deborah buehler, phd, president of the nfi board of directors also had such a positive vibe as examples of the many pockets of growth were provided where the nidcap approach is understood, valued, and promoted. nfi members need to find and read the committee reports. in our daily lives we can easily lose the “big picture” of growth around the world. this meeting helps us reconnect. clinical practice and abstract presentations showed strong examples of affecting change in systematic ways be it a specific care practice (four-handed care: l. eitan) or a unit culture shift as we saw in the beautiful photo presentation from sweden (continuous skin-to-skin contact: s klemming). the reflections on the virtual 32nd nidcap trainers meeting 20 – 22 october 2021 attendance at a nidcap trainers meeting provides us with the opportunity to hear new ideas and learn from our colleagues. below we have three unique perspectives of the meeting from members of the nfi. doi: 10.14434/do.v15i1.33789 26 • 2022 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 abstracts featured efforts to support families in their challenge to parent in the nicu and as nicu supports are removed, through the transition to home. the journal club, a fairly new component of meetings that has taken hold, brings us new ideas. this segment gave us two articles to share and discuss. generation z, as with each new family, will challenge us to accept families, individuals, as they are, and adapt. the bio-ecology of behavior and behavior change offers new insights as to how we understand change and perhaps a way to measure differences in change. a day full of thoughtful perspectives on change. may they inspire and challenge our next year as we work together. mandy daly nfi board member, founder of the irish neonatal health alliance preterm birth flips the paradigm of parenthood on its axis and robs families of their hopes, dreams and expectations. a preterm birth is often preceded by a rocky and tumultuous pregnancy journey and can culminate in an emergency birth situation that is fraught with urgency, fear and uncertainty. a full-term healthy pregnancy, a natural birth, those precious first moments when mum meets baby, babies first outside of the womb sensory experience skin to skin with mum, hearing her voice and smelling her scent are replaced by clinical handling by strangers, pain as airways are cleared and lines inserted, and fear and confusion. when a newborn requires care in the neonatal unit families are forced to re-evaluate their anticipated parenting role and as if being separated from one’s baby at birth is not traumatic enough, families are burdened further by having to learn the language of the neonatal unit, shelve their own need to recover physically and emotionally from the traumas of the pregnancy and delivery and find a way to parent their sick and vulnerable infant in an environment that excels at erecting barriers. research has demonstrated that the relationship that a baby has with their parent or primary carer, has an enormous impact on their future mental, physical, social, and emotional health. the neonatal period is critical to the development of the parent-child relationship. in fact, the strength of this relationship is the main predictor of how well a child will do both in school and in life. it is not founded on the quality of the care some of the 124 attendees from 23 countries present for the virtual nidcap trainers meeting. 2022 • developmental observer • 27 n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 or parental love, but on the non-verbal emotional communication that a parent develops with their child, known as the attachment bond. experience shapes the brain and having an infant in the neonatal unit has the potential to erode the fundamental and foundational natural connections; the consequences of which, if unaddressed can be detrimental for the infant and the family unit. families are the cornerstone upon which newborn care must be developed and delivered. it is imperative that newborn care practices embody the essence of connecting families and strive to repair the fractured connections at every juncture. the nidcap approach to care acknowledges the important role that families play in their baby’s development, it recognizes the infant’s need for positive familial and sensory experiences to support his/her developing competencies and it facilitates connections at every step of the journey by protecting the developing infant brain and the evolving infant parent relationship. the covid-19 global pandemic has brought unimaginable challenges for newborn healthcare systems and families, but never has it been more important to remain steadfast in keeping babies and their families together. on the first day of the nfi trainers meeting, dr. manuela filippa’s presentation about her unit’s family-based intervention that focuses on the benefits of early vocal contact between parents and preterm infants, struck a chord close to my heart. having spent over three months in a neonatal unit with my daughter many years ago, at a time when parents were still considered “visitors” on the unit, and seeing 15 years of advocating for family and infant centered developmentally supportive care to be embedded at the heart of care pathways, wiped out over-night in many nicus around the world by the pandemic, it was encouraging to see the positive results from initiatives such as manuela’s. we need to see more neonatal units adapt their practices to reflect positive research findings and researchers need to explore more opportunities that embed families at the heart of neonatal care. “always together makes all the difference for all involved” —dr. heidelise als, founder of the nidcap federation international references: 1. graven sn, browne j v. sensory development in the fetus, neonate, and infant: introduction and overview. newborn infant nurs rev 2008; 8: 169–172. doi:10.1053/j. nainr.2008.10.007 2. bieleninik ł, ghetti c, gold c. music therapy for preterm infants and their parents: a meta-analysis. pediatrics 2016; 138 (8): e20160971. doi: 10.1542/peds.2016-0971 3. arnon s, diamant c, bauer s, et al. maternal singing during kangaroo care led to autonomic stability in preterm infants and reduced maternal anxiety. acta paediatr int j paediatr 2014; 103: 1039–1044. doi: 10.1111/apa.12744 4. haslbeck, friederike; hugoson, pernilla (2017). sounding together: family-centered music therapy as facilitator for parental singing during skin-to-skin contact. in: filippa, manuela; kuhn, pierre; westrup, björn. early vocal contact and preterm infant brain development: bridging the gaps between research and practice. cham: springer, 217-238. doi.org/10.1007/978-3-319-65077-7_13 5. cresswell jw. research design – qualitative, quantitative and mixed methods. 3rd edition. 2009. sage publications, los angeles. https://www.ucg.ac.me/skladiste/ blog_609332/objava_105202/fajlovi/creswell.pdf 6. loewy j, stewart k, dassler a-m, et al. the effects of music therapy on vital signs, feeding, and sleep in premature infants. pediatrics 2013; 131: 902 lp – 918. doi: 10.1542/ peds.2012-1367 7. longin e, gerstner t, schaible t, et al. maturation of the autonomic nervous system: differences in heart rate variability in premature vs. term infants. j perinat med, 2006;34(4):303-8.doi: 10.1515/jpm.2006.058 8. westrup b. newborn individualized developmental care and assessment program (nidcap) family-centered developmentally supportive care. early hum dev 2007; 83: 443–449. doi: 10.1016/j.earlhumdev.2007.03.006 (continued from p. 11) the benefits of sponsoring the developmental observer include: » distribution and reach to the 250 members of the nfi, plus an additional 300 people receiving nfi news » potential reach to thousands of readers of the developmental observer via the nfi website and multiple social media platforms » developmental observer is indexed through scholar works, ebsco (us based library database abstract and indexing service) and google scholar. » sponsor information available to key health care professionals and policy developers for newborn care for more information on how to sponsor the developmental observer and promote your activity, meeting or company please contact info@nidcap.org. we offer three levels of corporate sponsor rates as well as institution/ organization rates. advertising in the developmental observer 2024 • developmental observer • 19 good afternoon, our nidcap work is all about seeing the lived experience of others, specifically the infant within the context of their family. as a nidcap professional, i have both the privilege and the responsibility to function as the voice of the individual infant and to facilitate others to understand their vulnerability, strength, and effort to navigate this strange new world outside of their mother’s womb. it is through nurturing relationships that we strive to support each infant, family, healthcare professional, and one another within the global community of the nidcap federation. for 34 years we have taken the time and energy to rededicate ourselves to this mission of improving the future for all infants in hospitals and their families with individualized, developmental, family centered research-based nidcap care. families are essential for the infant’s wellbeing. this is true from a biological perspective, through the family’s experience and in an effort to change our systems to provide a most supportive context to support families nurturing their infants. rarely an infant does not have an identified family. that is true for us as grown-up infants, as adult family members, as professionals who dedicate our careers to supporting infants and families – one infant at a time, one family at a time, one hospital at a time across the globe. families are complicated and made up of complex individuals. therefore, being a member of a family as well as supporting one another through our growing relationships is far more easily said than accomplished. many of you are aware of my somewhat unique family experience. my chosen family consists of myself and my husband of 47 years, in a multi-generational home with our son, his wife and their three amazing children. we honor the boundaries of our various relationship roles as parent, child and grandparent. we support one another through strong and close relationships nurturing one another through meals and childcare with mutual collaboration as we celebrate milestones of both young and old. then there is my experience of my family of origin – being one of thirteen adult children navigating our lives as individuals and family members beyond those of our deceased mother and father. we honor our parents’ wishes and dreams by sharing an amazing lake property and coming together for a full week every summer— and just as we the nidcap family are finding our way beyond our deceased fearless courageous leader heidelise als, we are struggling during the transition – trying to honor and be true to heidi’s mission and vision as our relationships understandably reconfigure. and just to complicate things a bit— both these losses in my family of origin as well as my nidcap family occurred within the context of the global pandemic. 34th annual nidcap trainers meeting summary and reflection gretchen lawhon, phd, rn, faan, master nidcap trainer presented to the delegates on the final day of the meeting doi 10.14434/do.v17i1.37080 gretchen with 11 of her 12 siblings 20 • 2024 • developmental observer nonetheless, here we are for our 34th year of meeting. this is what i think of as the annual reunion of my professional family. we have been trying to reconnect and to nurture ourselves and one another – building and strengthening our relationships – both new and old. we have learned a style of didactic presentations interspersed with small group discussions where we share ideas and experiences in a more personal manner. we are nurtured by our local hosts with food, drink, and social gatherings to further facilitate shared experiences and building relationships. deborah buehler (nfi president) provided the inaugural heidelise als lecture reminding us that the origin of heidi’s work included the concept of integrating the technological advances for our most vulnerable infants with the affective humanness of infants and their neurobiologically expected environments of the womb, parents’ body and family social group. throughout the first day not only did we have the joy of seeing powerpoint introductions of each individual attending in person but also those joining us virtually. for myself, and no doubt many others, this time dedicated to acknowledging each person provides us with feelings of pleasure, pride, and joy. in addition, stina klemming (sweden) and kaye spence (australia) provided us with not only a summary of our work over this past year, but also coordinated and put together an amazing array of every nidcap center’s individual accomplishments in the words, through video, of a representative of each center. for me, this was clear evidence supporting heidi’s statement that deborah mentioned “that we are all connected, we mutually support, teach, learn from, and enrich one another”. this speaks to me of relationships, both familial and professional. the other meaning, i took from our accomplishments was a strong sense that we have come out of the dark tunnel of the pandemic. as an organization, as a professional family – not only have we survived the pandemic, but we are thriving with renewed interest, enthusiasm, and growth of the nidcap federation. of course, with growth, there is some disorganization, sibling rivalry, and necessary, although sometimes painful, reorganization. our membership meeting and small group sessions on nurturing nidcap and the next steps for the nidcap federation provided a safe space for individuals to express some frustrations, sometimes courageous honest, yet difficult feedback which i believe will lead to much more valuable discussion with upcoming creative strategies and increased communication. as all families, we as the nidcap family have some traditions when we come together. we enjoy sessions such as our nidcap nursery small group exercise where we can look at a videotaped infant-caregiver interaction and discuss, evaluate, and assess, bringing our different disciplinary perspectives. another regular session we had was to think about and share various ways our nidcap work is translated to foundational education. we heard from diane ballweg about her experiences in various hospitals in the usa as well as nadine griffiths’ australian experience and graciela basso’s program for neonatologists in south america. woven throughout our three days were quite a variety of abstract presentations, a dozen of them which whet our appetite, generated further discussion and potential collaborations. this reminded me of being a child at the dinner table in my family of origin when it was expected that each of us would talk about our school day. some abstracts were a bit provocative, some quite novel, and overall, both reinforce our nidcap work and suggest further avenues for exploration. on day 2, we were able to get into our small groups to discuss and share moments of joy experienced with infants, their families and healthcare team. this topic had been delayed from in person participants at the 34th nidcap trainers meeting 2024 • developmental observer • 21 last year due to our somber meeting with our first gathering since heidi’s death. it was wonderful to share the moments of joy found within our emotionally exhausting work. on day 3, our nidcap family welcomed friends and guests, both in person and virtually, to join us as we concentrated on the essential importance of families to the wellbeing of the infant. in my work as a clinical nurse scientist, i often share with families that the most influential variable in long term outcome of infants is a nurturing adult infant relationship. with much appreciation jacques sizun (france) provided the tone for the day when he reflected on the legacy of heidelise als reminding us of how brilliant she was and so much ahead of time in her insights. we then had the opportunity to have jeff alberts enlighten us on the science of skin development and research on the development of touch, realizing that the most crucial containing touch has yet to be explored. joy browne (usa) gave us a great deal of information on the importance of sensitive periods in both infants and parents beyond the newborn period through the first months of early development. mandy daly (ireland) was incredibly generous in facilitating our understanding of the lifelong implications of prematurity from the family perspective. the afternoon was such a treat to have the enthusiasm of liz rogers (usa) on creating the culture of care in her setting with numerous wonderful ideas for each of us to take to our clinical homes. kiera sorrells was an inspiration to one and all as she shared her own experience with her premature daughters and how she took that difficult experience and translated it into the creation of an organization to support other parents in the usa. nick conneman (netherlands) shared his vision for achieving developmental care through the nidcap model emphasizing the importance of trust in the process. debra paul (usa) took her difficult situation of becoming a lone nidcap professional in a busy clinical setting and managed to strategize ways to continue to move forward on her own. she inspired me and i much appreciated her practical approach. saadieh masri (lebanon) finished our presentations with a very practical approach to how nidcap crossed frontiers – as she said, walk the talk. so, as we leave the 34th annual nidcap trainers meeting in chicago, what i call our professional family meeting, whether you have attended in person or virtually, for all three days or the open day, let us reflect on each of our own experiences. despite my initial fear and trepidation in returning to this prestigious group, the same feeling i have when heading to my family reunion each summer, i have no regrets. i am so pleased to have met new people, reconnected with friends and colleagues from as long ago as 1980, and gained a much more positive sense of the accomplishments of this organization. i felt much joy in spending time with you all and building relationships. we strive to mentor caregivers and change hospitals and when we do this work as well as possible it may be emotionally exhausting. let us go forth and continue to live the nidcap values of appreciating another’s lived experience and to improving the future for all infants in hospitals and their families with individualized, developmental, family centered research-based nidcap care. through our mutual support of one another, we can navigate our organizational transition successfully and continue to meet our mission. i hope to see each of you next year for our 35th annual nidcap trainers meeting in toulouse, france or what i call my professional family reunion. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 developmental observer 20 23 | v o l 1 6 | n o . 3 the official publication of the nidcap® federation international a philosophy….can help us choose the best approach from an ethical point of view, such as the philosophy of person/ family-centered care —jacques sizun 10.14434/do.v16i3.36574 inside translating data on brain ............... 1 development into practice editorial .............................................................. 2 assessment of preterm ..................... 6 infants' behavior family voices ............................................. 10 science desk .............................................. 12 nidcap leader profile ........................ 14 global perspective ............................... 16 french polynesia publications ................................................. 18 34th nidcap trainers meeting ..... 21 nidcap on the web ............................ 22 nidcap training centers .............. 24 o ne of the goals of the neonatal teams is to support and protect the developing brain in the newborn intensive care unit (nicu), as the baby only has ‘one brain for life’.1 medical treatments, such as antenatal steroids and magnesium sulfate, have been shown to be effective in preventing brain damage in preterm infants. in parallel, environmental and behavioral strategies have been proposed under the generic term of ‘developmental care’ or ‘brain care’. developmental care is an emerging science and needs to be as evidence-based as possible so that healthcare providers are in a position to choose the best strategies for care, and in order for healthcare teams to be trained effectively, and parents and families to be provided with the best and most comprehensive information available. brain plasticity is ‘the ability of the nervous system to change its activity in response to intrinsic or extrinsic stimuli by reorganizing its structure, functions, or connections’.2 brain plasticity is an opportunity for the newborn, as it offers a chance for rehabilitation after brain damage. brain plasticity is also a challenge: an early hostile environment could alter the steps of brain development, such as synaptogenesis. in case of prematurity, synaptogenesis occurs while infants are hospitalized in the newborn intensive care unit. this article focusses on the effects, as described in recent systematic reviews, translating data on brain development into practice doi: 10.14434/do.v16i3.36565 (continued on p.2) jacques sizun, md french nidcap center, toulouse, france a summary of the presentation given at the 33rd annual nidcap trainers meeting in bad bol, germany 2022 2 • 2023 • developmental observer the influence of nidcap is steadily increasing, as evident from the comprehensive body of work it encompasses. in this edition, jacques sizun presents compelling proof of nidcap's efficacy by examining current research and practical applications. notably, there has been a surge in publications citing nidcap's principles across multiple languages, underpinning its growing global recognition. the path of our global outreach remains unwavering. the nidcap federation international, driven by dedicated members, continues to propel the frontiers of this approach. through leadership, we are privileged to embark on journeys of discovery with our valued members. an insightful introduction to monique oude reimer-van kilsdonk hailing from the netherlands, offers a glimpse of our diverse membership. joy browne enriches our understanding of apib through a survey of our members, providing valuable insights that deepen our appreciation of its implementation. a pivotal facet of the nfi is our community of family members. nina nikolova's poignant account from bulgaria exemplifies how adversity can be the catalyst for assisting fellow families. i invite the members and readers of the developmental observer to share their journeys with developmental care. we warmly welcome your reflections on training, practice, interesting case studies, and the invaluable lessons drawn from personal experiences. your contributions stand to strengthen the developmental observer and the information to move developmental care forward. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia of some approaches aimed at preventing the negative impact of frequent stressors on brain development in the nicu. the stressors are sleep deprivation, pain, mother-child separation, and sensory dysstimulation. stressors in the nicu sleep deprivation animal studies, mostly conducted on rodents, have provided useful insights with regard to sleep deprivation.3 these studies have shown that sleep deprivation may result in: oxidative stress, neuroinflammation via chronic microglial activation, and the accumulation of the abnormal proteins p-tau and amyloid-β in the cerebral cortex. these studies have also shown a neurogenesis decline via complement activation, which alters the balance of fragile x-mental retardation protein expression.3 in addition, the impact of chronic sleep deprivation on behavioral development has been demonstrated. sare et al4 found shortand long-term changes in behaviors of sleep-deprived mice, measured by activity in an open field arena. males demonstrated decreased sociability and increased repetitive behaviors. this data from preclinical studies show that sleep deprivation in the neonatal period has long-lasting behavioral changes, possibly modulated by gender. pain a meta-analysis by steinbauer et al5 concluded that neonatal pain has a large effect on neuronal cell death in rodents. the higher number of neonatal pain events was significantly associated with increased neuronal cell death, increased anxiety, and depressant-like behavior. boggini et al6 summarized the impact of pain on preterm infants’ brain development demonstrated by mri studies. a volume reduction of white and gray matter structures at neonatal and school ages is associated with early postnatal pain exposure. however, there is a possible bias, as the most severe clinical conditions are associated with higher exposure to painful procedures. mother-child separation maternal separation, an early stressful experience, can negatively impact the newborn’s nociceptive system development and pain responses at different levels7 (table 1). epigenetic mechanisms are implicated in the long-term effects of this early life stress that could also impact the next generation. sensory stimuli during prenatal development in mammals, the sensory systems do not become functional at the same time, but rather in a specific and invariant sequence: first tactile, then vestibular > chemical > auditory > visual.8 this differential timing of sensory system onset could benefit the earlier developing sensory systems as it allows them to develop without competition or interference from later developing sensory systems. in the case of preterm birth, the sensory stimuli are numerous, intense, simultaneous, chaotic, and physically different from those observed in utero.9 this could negatively impact synaptogeneditorial cover image by emmanuel angelicas doi: 10.14434/dov16i3.36574 (continued on p. 3) 2023 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist and a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board esis. according to bourgeois, ‘experimental models provide an additional example showing that a perturbation at an early neurodevelopmental stage may have a late and long-lasting effect of disorganization despite an apparently normal intermediate period’.10 the research data shows evidence for the importance of prevention of pain, stress, mother-child separation and inappropriate stimulation in the nicu. what is the evidence for the strategies that reduce these stressors? strategies for reducing stress sleep support strategies a systematic review found that swaddled preterm newborns arouse less and sleep longer.11 swaddling stimulates sleep continuity, as shown under laboratory conditions and in descriptive studies. the effect is most consistent in periods of quiet sleep (qs), but not always consistent during rapid eye movement (rem) sleep. table 1: overview of maternal separation on the nociceptive system [adapted from melchior et al.7] gastro-intestinal tract dorsal root ganglion spinal cord higher brain centers increased permeability of the mucosal layer inflammation change in microbiota composition increased excitability of afferent neurons increased expression of nav 1.8 decreased expression of kv1.2 increased activity of superficial and deeper layers changes in neurotrophic factors expression differential activation of the pain matrix alteration of descending controls of pain central inflammation (continued on p.4) 4 • 2023 • developmental observer a cochrane review of non-nutritive sucking (nns) found four studies reported on behavioral states with different methods of reporting states.12 two studies reported no effect, one study reported the most frequent transition was from qs to drowsy for the nns group, and one study reported that sleep states were more frequent in the nns group. the impact of skin-to-skin on sleep in neonates has been clearly demonstrated.13 according to a review from the american academy of pediatrics,13 skin-to-skin increases frontal brain activity during both quiet and active sleep, supports a more mature sleep organization, with increased total and quiet sleep, decreased rem sleep and arousals from sleep, and improves sleep cycling. therefore, the best strategy to protect sleep is to encourage parents to be present in the nicu and to provide extensive skin-to-skin for their infant. in a study of infants receiving regular care versus developmental care practices (covering the incubator, decreasing environmental noise, using supportive bedding, and promoting state transition by hand swaddling, non-nutritive sucking, or grasping), sleep time was increased both in as and qs states.14 in a systematic review of randomized control studies on the effects of music therapy on premature infants,15 recorded music interventions were not associated with a significant effect on behavioral states. live music interventions were shown to improve sleep in three out of four studies, however, behavioral states were defined with different non-validated tools. due to the heterogeneity of type and duration of interventions, gestational age of the subjects, and outcome measures, there was not enough evidence to recommend music therapy. pain control strategies numerous clinical trials and meta-analyses have demonstrated the efficacy of non-pharmacological interventions on the behavioral expression of pain in newborns: swaddling, flexed position, non-nutritive sucking, oral sucrose, breastfeeding or mother’s milk, and skin-to-skin. association and/or superiority of interventions are less studied.16 more trials studying the impact of these interventions on the cortical response and the effect of structured parent involvement are needed. maternal separation strategies new world health organization (who) guidelines advise that kangaroo mother care should start immediately after preterm birth without an initial period in an incubator.17 these recommendations are based on recent trials demonstrating the positive impact of very early skin-to-skin on survival or cardiorespiratory stabilization.18,19 mother-newborn couplet care is considered the best strategy to support the zero-separation concept. however, the current evidence is scarce.20 the stockholm neonatal family centered care study demonstrated a 5.3-day reduction in total length of stay and a reduced risk of moderate-to-severe bronchopulmonary dysplasia in the couplet-care group.21 believing that all these interventions could be integrated with an evidence-based global approach, roué et al collaborators identified eight principles that do not need more research before routine use.22 these include free 24-hour parental access, pain management, environmental influences, support of skin-to-skin, and sleep protection. science, philosophy, and human rights while the scientific evidence is strong, science alone cannot guide all aspects of care for hospitalized newborns. a philosophy ‘a theory that acts as a guiding principle for behavior’ can also help us choose the best approaches from an ethical point of view, such as the philosophy of person/family-centered care. in this case, scientific evidence is not then necessary. instead, the ethical reflection, both individually and as a group, can inspire and enrich the approach. moreover, in a study concerning the participation of nicu parents in medical rounds, some parents argued that it was not a philosophical question, but just the expression of human rights, their ‘right’ to be present, and their ‘right’ to participate in the decisions concerning their baby.23 although science is an important factor in determining best practice, the respect of human rights is also very important. guidelines in order to put the science and philosophy to practice it is necessary to have access to the data and for clear guidelines/ recommendations/standards to be formulated and followed. many guidelines are easily accessible and can guide high quality care in the nicu. gap between research and practice despite the existence of scientific evidence and easily accessible recommendations from national or international agencies and organizations, a significant gap exists between knowledge and practice. an example is a multisite survey across 13 nicus in paris about procedural pain in newborns.24,25 one nicu used non-pharmacological interventions for painful procedures only 2.4% of the time, whereas another nicu used these strategies 81% of the time. they also measured the difference in pain control during the day and the night and found that the babies were more protected from pain during the day than at night. the only difference was parental presence. there is high evidence for the importance of parental presence, yet implementation is lacking. why is there such a difference between these units given they all have access to the same research? another study, the french epipage study26 showed that there was little range in difference across units on medical interventions, but there was a large difference across units in the use of behavioral strategies. it was also shown that there was no significant difference between the cluster of infants who received intensive medical intervention and those who received more behavioral interventions. although there is a high level of research on the benefits of 2023 • developmental observer • 5 behavioral strategies there is great difference in the implementation of these strategies which has an effect on the comfort and care of the baby and ultimately on the baby’s outcome. nidcap training and implementation of brain-care practices the french epipage study gives us information on the implementation of medical and nursing practices such as skin-to-skin, breastfeeding support, and pain control, and the association with professional education and training.26,27 the authors observed large unit-level variations not explained by differences in infants’ characteristics across units, but possibly explained by neurodevelopmental care policies and training. the nidcap training compared with no training was significantly associated with early kangaroo-mother-care (kmc) initiation: [or, 3.5; 95% ci, 1.8–7.0] and sufficient perceived maternal information on infants’ pain [aor (95% ci) 2.6 (1.7–4.1)].26,27 there has been much evidence on the effectiveness of nidcap on the infants’ outcome, but this was one of the first studies to show the influence of nidcap training on evidence based care practices. how can we explain this? dominique haumont identified ten points where nidcap impacts early developmental care, including assessment of pain, kangaroo care, and sleep organization.28 the tenth point identified nidcap training as a tool for change. nidcap is not a prescribed protocol, instead nidcap implementation is said to be ‘process-guided’: a continuous process requiring flexible procedures and not procedurally-based attitudes. nidcap is also ‘relationship-based’ as it provides a new way of thinking about our relationships with the babies, the parents, and our colleagues. the third aspect is ‘system-oriented’ thinking as a change in any part of the system has an effect on the whole system.29 conclusion • research highlights the vulnerability of the developing brain in hospitalized newborns. • developmental care practices are evidence-based. • a research-practice gap exists. • nidcap could bridge this gap. references 1. amiel-tison c, stewart a. the newborn infant: one brain for life. inserm edition, paris 1994. 2. mateos-aparicio p, rodríguez-moreno a. the impact of studying brain plasticity. front cell neurosci 2019; 13:66. doi: 10.3389/fncel.2019.00066 3. alrousan g, hassan a, pillai aa, atrooz f, salim s. early life sleep deprivation and brain development: insights from human and animal studies. front neurosci. 2022 16:833786. doi: 10.3389/fnins.2022.833786. 4. saré rm, levine m, hildreth c, picchioni d, smith cb. chronic sleep restriction during development can lead to long-lasting behavioral effects. physiol behav. 2016 155:208-17. doi: 10.1016/j.physbeh.2015.12.019. 5. steinbauer p, monje fj, kothgassner o, goreis a, eva c, wildner b, schned h, deindl p, seki d, berger a, olischar m, giordano v. the consequences of neonatal pain, stress and opiate administration in animal models: an extensive meta-analysis concerning neuronal cell death, motor and behavioral outcomes. neurosci biobehav rev. 2022 137:104661. doi: 10.1016/j.neubiorev.2022.104661. 6. boggini t, pozzoli s, schiavolin p, erario r, mosca f, brambilla p, fumagalli m. cumulative procedural pain and brain development in very preterm infants: a systematic review of clinical and preclinical studies. neurosci biobehav rev. 2021 123:320-336. doi: 10.1016/j. neubiorev.2020.12.016. 7. melchior m, kuhn p, poisbeau p. the burden of early life stress on the nociceptive system development and pain responses. eur j neurosci. 2022 55(9-10):2216-2241. doi: 10.1111/ ejn.15153. 8. lickliter r. the influence of prenatal experience on behavioral and social development: the benefits and limitations of an animal model. dev psychopathol. 2018 30(3):871-880. doi: 10.1017/s0954579418000640. 9. kuhn p, dillenseger l, langlet c et al. environnement en unités de soins intensifs et soins de développement centrés sur l’enfant et sa famille. in j. sizun, b. guillois, c tscherning, p kuhn, g thiriez (eds). soins de développement en période néonatale. de la recherche à la pratique. lavoisier médecine, paris 2022; pp 53-60. 10. bourgeois jp. synaptogenesis in the neocortex of the newborn: the ultimate frontier for individuation? in: h. lagercrantz, m hanson, p evrard , c rodeck (eds). the newborn brain: neurosciences and clinical applications, cambridge university press 2002. pp 91-11. 11. van sleuwen be, engelberts ac, boere-boonekamp mm, kuis w, schulpen tw, l'hoir mp. swaddling: a systematic review. pediatrics. 2007 oct;120(4):e1097-106. doi: 10.1542/ peds.2006-2083. 12. foster jp, psaila k, patterson t. non‐nutritive sucking for increasing physiologic stability and nutrition in preterm infants. cochrane database of systematic reviews. 2016; 10(10):cd001071. 13. baley j; committee on fetus and newborn. skin-to-skin care for term and preterm infants in the neonatal icu. pediatrics. 2015 136(3):596-9. doi: 10.1542/peds.2015-2335. 14. bertelle v, mabin d, adrien j, sizun j. sleep of preterm neonates under developmental care or regular environmental conditions. early hum dev. 2005 81(7):595-600. doi: 10.1016/j. earlhumdev.2005.01.008. 15. van der heijden mj, oliai araghi s, jeekel j, reiss ik, hunink mg, van dijk m. do hospitalized premature infants benefit from music interventions? a systematic review of randomized controlled trials. plos one. 2016 11(9):e0161848. doi: 10.1371/journal. pone.0161848. 16. pillai riddell rr, bucsea o, shiff i et al. non-pharmacological management of infant and young child procedural pain. cochrane database syst rev. 2023; 6(6):cd006275. 17. https://www.who.int/news/item/15-11-2022-who-advises-immediate-skin-to-skin-care-forsurvival-of-small-and-preterm-babies 18. who immediate kmc study group. immediate "kangaroo mother care" and survival of infants with low birth weight. n engl j med 2021; 384:2028-2038. doi: 10.1056/ nejmoa2026486. 19. linnér a, lode kolz k, klemming s, bergman n, lilliesköld s, markhus pike h, westrup b, rettedal s, jonas w. immediate skin-to-skin contact may have beneficial effects on the cardiorespiratory stabilisation in very preterm infants. acta paediatr. 2022 111(8):15071514. doi: 10.1111/apa.16371. 20. klemming s, lilliesköld s, westrup b. mother-newborn couplet care from theory to practice to ensure zero separation for all newborns. acta paediatr. 2021 110(11):2951-2957. doi: 10.1111/apa.15997. 21. ortenstrand a, westrup b, broström eb, sarman i, akerström s, brune t, lindberg l, waldenström u. the stockholm neonatal family centered care study: effects on length of stay and infant morbidity. pediatrics. 2010 125(2):e278-85. doi: 10.1542/peds.2009-1511. 22. roué jm, kuhn p, lopez maestro m, maastrup ra, mitanchez d, westrup b, sizun j. eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit. arch dis child fetal neonatal ed. 2017 102(4):f364-f368. doi: 10.1136/ archdischild-2016-312180. 23. abdel-latif me, boswell d, broom m, smith j, davis d. parental presence on neonatal intensive care unit clinical bedside rounds: randomised trial and focus group discussion. archives of disease in childhood-fetal and neonatal edition 2015;100(3):f203-9. 24. carbajal r, rousset a, danan c, coquery s, nolent p, et al. epidemiology and treatment of painful procedures in neonates in intensive care units. jama. 2008 jul 2;300(1):60-70. doi: 10.1001/jama.300.1.60. 25. guedj r, danan c, daoud p, zupan v, renolleau s. does neonatal pain management in intensive care units differ between night and day? an observational study. bmj open. 2014 4(2):e004086. doi: 10.1136/bmjopen-2013-004086. 26. pierrat v, coquelin a, cuttini m, khoshnood b, glorieux i; epipage-2 neurodevelopmental care writing group. translating neurodevelopmental care policies into practice: the experience of neonatal icus in france-the epipage-2 cohort study. pediatr crit care med. 2016 oct;17(10):957-967. doi: 10.1097/pcc.0000000000000914. 27. pierrat v, marchand-martin l, durrmeyer x, et al. neurodevelopmental care study group of epipage -2. perceived maternal information on premature infant's pain during hospital ization: the french epipage-2 national cohort study. pediatr res 2020;87(1):153-162. 28. haumont d. nidcap and developmental care. journal of pediatric and neonatal individualized medicine (jpnim), 3(2), e030240. 29. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. semin perinatol. 1997 21(3):178-89. doi: 10.1016/s0146-0005(97)80062-6. 2020 vol. 13 no. 1 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “averages… seduce us away from minute observation.” florence nightingale greetings from the editor as we start a new decade the future looks bright for the developmental observer. we have expanded our editorial team to include debra paul as column editor for the family voices and maria maestro lopez who brings a european perspective. we took the opportunity to meet as a group together with graphic designer, rob catalano. this face-to-face meeting gave us the opportunity to discuss future directions for the developmental observer and develop a plan. in this issue we have the abstracts from the 30th annual nidcap trainers meeting held in portsmouth, new hampshire, usa. the abstract topics highlight the breadth of nidcap work from the science of oxytocin, implementation strategies for programs of reading, use of volunteers, the cicu to refugee health. the abstracts and other articles in this issue now have unique dois that will enable others to locate the articles easily through the iuscholarworks platform. we highlight the nidcap germany training center tübingen which hosts the next trainers meeting in october. you will be challenged by marjorie palmer to consider pacing for infants who have difficulty feeding, and natascia bertoncelli takes us through her involvement with the european standards and highlights this valuable resource. with our regular features from the science desk jeff alberts explores the fascinating world of epigenetics and nidcap work and debra paul introduces us to the little warrior of matilda as told by her mother tracey. we learn about developmental care in chile as we explore the globe in each issue. i welcome your feedback and suggestions for future content. i would also like to receive manuscripts on any aspect of nidcap work so we can all benefit from innovation and experiences. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia table of contents editorial ...................................................... 1 abstracts .................................................... 2 intervention strategies for the poor feeder ....................................................... 14 global perspective of developmental care – chile ............................................. 16 family voices .......................................... 17 european standards for newborn health ....................................................... 20 the science desk .................................... 22 nidcap training centers around the world ........................................................ 24 nidcap on the web ................................ 28 issn: 2689-2650 (online) do 13:2 full issue doi: 10.14434/do.v13i1.29113 abstract edition kaye spence, am editorial team (from left): sandra kosta, kaye spence, rob catalano, gretchen lawhon, debra paul, dianne ballweg, jeffrey alberts, maria maestro lopez, deborah buehler. doi: 10.14434/do.v13i1.29076 2 • 2020 • developmental observer oxytocin responsivity during skin-to-skin care and diurnal cortisol predict depression, trauma and bonding scores at nicu discharge in parents of preterm infants bollen b1,2, bernagie c1,2, verhaeghe j1,3, vanhole c1,2, naulaers g1,2 1 department of development and regeneration, women and child, university of leuven, leuven, belgium 2 neonatology department, university hospitals leuven, leuven, belgium 3 department of gynaecology and obstetrics, university hospitals leuven, leuven, belgium aims preterm birth is a potential traumatic experience for parents. several studies show a high prevalence of depressive and posttraumatic stress symptoms in mothers of preterm infants.1 hormonal changes in cortisol and oxytocin have both been implicated in these stress responses and also in parent-infant biobehavioral synchrony.2 we aimed to predict parental depression, posttraumatic stress and bonding at nicu discharge. we hypothesized that the physiological response of parents to skin-to-skin care (cortisol and oxytocin) would predict emotional distress and feelings of bonding. we also took into account early markers of parental distress (questionnaires postnatal week two). methods data were collected for the resilience study (nct02623400): a prospective longitudinal cohort study performed in the university hospitals leuven. parents (n=105 parental dyads) of 136 infants (<34w ga and/or bw< 1500 g) were included. parents completed questionnaires in postnatal week 2 and in the week before discharge. depressive symptoms (edinburg postnatal depression scale (epds)), acute trauma symptoms (acute stress disorder scale (asds)) and posttraumatic stress disorder (impact of event scale (ies) & traumatic event scale (tes)), and parental stress (pss-nicu) were measured, both in mothers and fathers. feelings of bonding were measured using the postpartum bonding questionnaire (pbq). furthermore, parental saliva samples were collected to determine diurnal cortisol profile (awakening, 30 min, 4h, 12h later) as well as oxytocin and cortisol response during kangaroo care (kc, before, 20 min, 60 min). data were analyzed using multiple regression analysis. results mothers and fathers of preterm infants in our sample show high levels of emotional distress. results show 76.5% of mothers, and 40.7% of fathers exceed clinical cut-off scores for postnatal depression. in general, these levels of emotional distress decrease during hospitalization. both in mothers and fathers, acute stress scores (postnatal week 2) but also diurnal salivary cortisol level (auc) were significant predictors of parents’ post-traumatic stress symptoms at discharge (mothers: f(2,74) = 25.49, p <0.0001, r2=0.41; fathers: f(2,64) = 19.31, p<0.0001, r2=0.38). interestingly, the salivary response in oxytocin level during kc is a significant predictor (p<0.01) of both depression and bonding scores at discharge in mothers: a higher increase in ot during kc care is associated with lower depression scores and with higher bonding scores in mothers. conclusion this study finds high levels of emotional distress in both mothers and fathers of preterm infants. acute stress scores and diurnal cortisol in postnatal week 2 predicted posttraumatic stress symptoms at discharge, both in fathers and mothers. changes in salivary oxytocin level during kc predicted bonding and depression scores in mothers. our findings emphasize the vulnerability of parents of preterm infants and draws attention to physiological responses underlying parental emotional distress. our findings also highlight the need for specialized and individualized support for nicu parents. references: 1. hynan m, mounts k, vanderbilt d. screening parents of high-risk infants for emotional distress: rationale and recommendations. journal of perinatology 2013,33(10):748. 2. feldman r. sensitive periods in human social development: new insights from research on oxytocin, synchrony, and high-risk parenting. development and psychopathology 2015,27(2):369-95. a semi-annual publication of the nidcap federation international ©2020. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria maestro lopez, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer doi: 10.14434/do.v13i1.29079 developmental observer • 2020 • 3 background the neonatal intensive care unit (nicu) is a complex, technology-driven environment where health care professionals have many tasks to accomplish throughout the day. critically ill infants have complex physiological needs requiring advanced medical and nursing interventions to sustain life. developing parent-infant relationships are influenced by the interactions within these early life experiences.1 parents have identified communication and information provided by nurses as important factors influencing their experiences.2,3 prior research establishes that caring behaviors directed at the infant’s family are a significant component contributing to parent satisfaction with care.4,5 additionally, the family unit has been identified to impact the health and well-being of the infant and conversely, the health of the infant has been shown to impact the health status of the family.6 aims the purpose of this study is to examine health care providers’ beliefs and perceptions regarding providing family-centered care (fcc) in the nicu as well as variables that may influence provision of fcc. methods this exploratory descriptive study used an online survey format. the survey comprised of 10 items from the perceived stress scale, 10 items related to symptoms of burnout, a subscale of the professional quality of life (proqol) scale and 27 items of the family nurse caring belief scale (fncbs).7 there were 6 items related to demographic characteristics, and 2 items regarding rationing care. hospital irb approval was obtained. an email which contained an information sheet describing the study with a link to a secure anonymous online survey through (www.qualtrics. com) was sent by an administrative assistant. no identifiable information was collected from participants. consent was implied if respondents connected to the link to access the survey. two reminder emails were sent after 1 and 3 weeks from the initial email invitation. the questionnaire was available to participants for a total of 4 weeks. spss version 25 was used for analysis of descriptive statistics, pearson’s correlation and one-way analysis of variance (anova) were used to analyze participant responses. results the sample consisted of 115 multidisciplinary participants working in a level lv nicu in southeastern united states. participants report strong levels of beliefs of fcc and value its importance. the majority of participants (82%) strongly agree that no matter how sick the infant is, he/she needs to be treated as an individual, the remaining 18% agreed with this statement. participants strongly agreed (68%) being available to families is an essential part of care in the nicu, the remaining 32% of participants agreed with this statement. a significant correlation (.001) exists between participant’s stress composite score and fcc composite score indicating higher levels of stress are correlated with lower fcc scores. there were significant relationships between participant’s years of experience (0.002) and education levels (0.005) in the nicu and fcc composite scores. there were also significant relationships between participant’s years of experience (0.004) and fcc education (0.039) and perceived stress scale composite scores. there were no relationships identified for the professional quality of life (burnout) composite scores and demographic characteristics. conclusion health care professionals care greatly about providing fcc and understand its importance. results suggest that participants agreed fcc is important yet feel inadequate staffing and inappropriate assignments may lead to rationing of care to infants and their families. further research is needed given the limitations of this exploratory single-site study. it is essential to continue exploring factors that may lead to rationing of fcc, provision of fcc in the nicu is associated with reduced stress experiences, shorter durations of stay, and ultimately enhanced parent-infant relationships.8 references: 1. vittner d, mcgrath jm, robinson j, lawhon g, cusson r, eisenfeld l, walsh s, young e, cong x. increases in oxytocin from skin-to-skin contact enhances development of parent-infant relationships. biological research for nursing 2018, 20(1):54-62. http://doi: 10.1177/1099800417735633 2. lawhon g. integrated nursing care: vital issues important in the human care of the newborn. seminars in neonatology 2002,7:441–446. 3. johnson an. promoting maternal confidence in the nicu. journal of pediatric health care 2008, 254–257. 4. meiers sj, tomlinson p, peden-mcalpine, c. development of the family nurse caring belief scale (fncbs). journal of family nursing 2007, 13(4): 484-502. http// doi:10.1177/1074840707310734 5. yu x, zhang j. family centred care for hospitalized preterm infants: a systematic review and meta analysis. international journal of nursing practice 2018, e12705. 6. hinds ps, feetham sl, patterson kelly k, nolan mt. "the family factor" knowledge needed in oncology research. cancer nursing 2012, 35(1);1-2. http//doi:10.1097/ ncc.0b013e31823b561f 7. magri ep. psychometric validation of the family nurse caring belief scale in a neonatal nursing population. theses & dissertation 2014. 8. staniszewska s, brett j, redshaw m, psychol c, hamilton k, newburn, et al. the poppy study: developing a model of family-centered care for neonatal units. worldviews of evidence-based nursing 2012, 243-255. http//doi:10.1111/j.1741-6787.2012.00253.x health care professionals beliefs and perceptions on family-centered care in the nicu vittner d1,2, parker m1, demeo s1, baxter a2, and mcgrath j3 1 wakemed health & hospitals, raleigh, nc usa 2 university of connecticut, school of nursing, storrs, ct usa 3 university of texas, health science center san antonio, san antonio, tx usa doi: 10.14434/do.v13i1.29080 4 • 2020 • developmental observer nidcap influences maternal/newborn health in the embrace refugee birth support program frankel k. private practice, developmental specialist, atlanta, ga, usa member of emory university perinatal behavioral support project friends of refugees: embrace birth family mentor aims/purpose approximately 95,000 people are living in refugee camps on the border of thailand and burma (myanmar).1,2 ethnic minorities (chin, karen and others) who have fled conflict for over 30 years have registered with the united nations to be resettled in a third country. many escaped as children and grew up with limited education, healthcare, and job opportunities. a large group has resettled in georgia finding employment in chicken processing facilities an hour north of the city. fathers leave their families 12 hours per day. pregnant women in this community are at risk for poor prenatal care due to lack of transport, caring for other children, and lapses in medicaid coverage.4,5 new arrivals struggle to learn english and to adapt to american customs. the strengths of the community are apparent in their humble nature, diet of proteins, homegrown vegetables and rice, value of the nuclear family, and nurturing of their children in close contact. this population is vulnerable when encountering the healthcare system due to language, cultural differences and lack of understanding of american healthcare practices.4,5 the embrace program is a community effort which identifies pregnant immigrant women and pairs them with caring mentors. the mentor accompanies the woman through childbirth and all prenatal, postpartum, and early pediatric appointments. the aim here is to describe how an adaptation of nidcap principles can provide a culturally sensitive framework for individualized assessment and care while mentoring a karen mother. the goal was to minimize the effects of stress of birth and hospital encounters, and improve maternal/infant birth experiences by employing principles of family centered individualized care, observation, and reflection.6 methods a 28 year-old gravida 5 para 4 burmese mother had two normal deliveries in a refugee camp prior to arrival in the us in 2013. her third pregnancy ended in fetal demise. during her 5th pregnancy she missed prenatal appointments and was labeled as high risk. english was limited and she had an extremely humble nature in the face of challenges. the embrace mentor, a nidcap trained provider, established trust and friendship by accompanying her to birth classes (instructed by another karen immigrant) where she was educated on delivery, hospital policies, infant care, and family planning. she developed a pictorial narrative of her birth plan. the mentor transported her to prenatal appointments where there was the opportunity to observe and interpret her responses to medical information, seeing the ultrasound of her baby, and painful procedures. findings labor occurred spontaneously at 39 weeks. careful observation revealed that contractions were coming 10 minutes apart. she was transported to the hospital and assessed as 4 cm dilated. the mentor remained at the mother’s side and counted contractions. labor progressed rapidly with low intensity responses from the mother. the baby was moderately distressed at birth requiring suction and stimulation. the nidcap trained mentor supported the infant on the warming table and in transition to the mother’s chest. the infant improved his status and was monitored with pulse oximetry. the mentor offered to observe the infant carefully so that mother and baby could have protected skin to skin time. in the 48 hours after the birth, nidcap principles of modifying the environment, observation, positioning, supporting with painful procedures, and maximizing skin to skin were instituted.6,7 conclusion family integrated, relationship based, culturally sensitive, and responsive maternal-infant interactions were the nidcap principles implemented improving the experience for this mother and infant. as stated in the nidcap vision statement, care was individualized, enhancing strengths and minimized the stress of hospitalization of a newborn and his family. an evidence-based approach of observation, evaluation, modification and reflection was employed.6,7 it is the hope of this author that nidcap training could be used in diverse settings and with people in need of sensitive caregiving. references 1. https://worldrelief/fortworth.org burma(myanmar) karen cultural profile/2018 2. https://ethnomed.org/culture/karen/karen-cultural-profile 3. https:www.state/gov/refugee-admissions department of state bureau of population refugees and migration 4. dyer jm, baksh l. a study of pregnancy and birth outcomes among african-born women living in utah. national center on immigrant integration policy, nov 2016. 5. grace lb, bais r, roth bj. the violence of uncertainty undermining immigrant and refugee health. new england journal of medicine 9/6/2018. 6. als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of the neurobehavioral development of the premature infant and his parents in the environment of the neonatal intensive care unit. in sweeney jk (ed.), the high-risk neonate: developmental therapy perspectives. physical and occupational therapy in pediatrics 1986, 6(3/4):3-55. 7. https://nidcap.org/wp-content/uploads/2018/missionandvision doi: 10.14434/do.v13i1.29077 developmental observer • 2020 • 5 background infants admitted to the newborn intensive care unit (nicu) are at increased risk of developmental delay; additionally, they are exposed to sounds but relatively little language. language exposure, such as talking, reading, and singing, is essential for speech and language development. greater language exposure and shared reading in the nicu is associated with better neurodevelopmental outcomes.1,2 as such, the american academy of pediatrics (aap) recommends that parents begin sharing books with infants as soon as possible after birth. shared book reading can help parents promote literacy and reading achievement in their children; it also enhances parent infant bonding and reduces parental stress.3 intervening in the nicu encourages parents to continue reading to their infant post-discharge; however, such a book sharing program has not been carried out on a large scale in a heterogeneous and diverse population in the cincinnati region. relevance to nidcap this project supports development of relationships between parents and infants in a nicu. such early interactions, based upon responsive and synchronous experiences, may positively influence infant short-and long-term outcomes. staff involvement that embraces parental partnership builds trust and positive unit culture. embracing the synactive theory we know that infant behavior proceeds through continuous balancing of approach and avoidance behaviors across five subsystems, communicated as infant biobehavioral cues. understanding and utilizing these behaviors is key to the length and timing of book sharing with infants in the nicu, as we individualize our interactions to support the competence of each infant within their family’s supportive structure. aim the aim of this project was to increase the adoption of shared book reading between parents and infants by increasing the percentage of parents sharing books with their infants in the nicu and continuing that book sharing post-discharge. method all families from nicus in the cincinnati region from june 1, 2018 were approached. discharged families were administered an institutional review board (irb) approved questionnaire at their first clinic visit assessing home reading environment and shared reading practices, adapted from a validated measure and from nicu infant-shared reading literature.3 results/findings before starting the intervention staff and parent reading beliefs and behaviors were assessed, as were the home reading environment for infants recently discharged from the nicu. the pre-intervention outpatient parent survey clinic in 198 families showed that 143 (64%) had infants who were never or rarely read to in the nicu, while 64 (29%) never or rarely read at home. only 85 (38%) recalled having received anticipatory guidance on shared reading in the nicu, and very few (11%) recalled being shown how to read to their nicu infant. after adjusting for potential confounders, the frequency of reading aloud in the nicu was independently associated with the frequency post discharge (p<0.001). the nicu bookworm program was designed with the hypothesis that such a program would increase the frequency of book sharing in the nicu and at home post discharge. post intervention our data revealed that in 115 families, parents receiving anticipatory guidance increased from 38 to 60%. parents being shown how to share books with their infant increased from 11 to 56%. parents regularly reading to their child significantly increased in the nicu (34 to 54%). parents regularly reading to their child at home increased (71 to 75%), but significant change was seen in the high-risk group (parents who did not enjoy reading) from 46% to 72%. conclusion despite aap recommendations, there exist significant gaps on giving anticipatory guidance to parents in the nicu about shared book reading. healthcare professionals can play a significant role in increasing this practice. in our population a structured book-sharing program increases reading behaviors in the nicu as well as at home post-discharge, with the most significant benefit seen in the high risk group of parents who themselves do not enjoy reading. references: 1. braid s, bernstein j. improved cognitive development in preterm infants with shared book reading. neonatal network. 2015,34(1):10-17. 2. caskey m, stephens b, tucker r, vohr b. adult talk in the nicu with preterm infants and developmental outcomes. pediatrics 2014,133(3):e578-584. 3. lariviere j, rennick je. parent picture-book reading to infants in the neonatal intensive care unit as an intervention supporting parent-infant interaction and later book reading. journal of developmental and behavioral pediatrics 2011,32(2):146-152. using newborn individualized developmental care and assessment program (nidcap) philosophy and principles in the implementation of a nicu book sharing program lacina l, roux m , kessler c, jain v newborn intensive care unit, cincinnati children’s hospital medical center, cincinnati, oh, usa doi: 10.14434/do.v13i1.29081 6 • 2020 • developmental observer aims congenital heart disease (chd) is among the most common birth defect with approximately 36,000 u.s. infants born annually.1,2 more than one-third of infants with chd will require infant surgery.3,4 neurodevelopmental disabilities are the most common, and arguably the most distressing, long-term morbidity in survivors.1,2,5 while mortality rates for children with chd have significantly declined, neurologic abnormality and neurodevelopmental impairment have increased. neurodevelopmental deficits are noted from infancy to adulthood including developmental delays, learning disabilities, social and emotional concerns and behavioral problems.6-10 there are many causes of the neurodevelopmental concerns in individuals with chd. one modifiable cause is the in-hospital care and its negative effects on the developing newborn brain. the cardiac intensive care unit (cicu), while necessary to save the life of the infant with chd, exposes infants to overwhelming stress through noxious stimuli, including painful procedures, invasive lines and tubes, toxic sensory stimulation, and separation from family. current research advocates for adjustment to medical practice to reduce the detrimental developmental effects.11,12 research also indicates that interventions such as developmental care (dc) are minimal in cardiology due to a need for staff education and a shortage of evidence for the benefits of dc in cardiology.13 individualized dc in the nidcap approach14 attempts to minimizes the mismatch between infant neurobiological needs and the cicu environment, thus diminishing the frequency and severity of adverse effects on the infant with chd. nidcap has repeatedly proven to improve neurodevelopment and psychosocial outcomes for high-risk infants and their families.15-17 the global aim of the current project was to be the first cicu to implement and measure nidcap care. methods an interdisciplinary team was convened to implement nidcap care in the cicu through quality improvement (qi). developmental care implementation included: (1) staff education, (2) child neurodevelopment assessment and intervention, (3) clinician support, (4) family support, and (5) qi measurement methodology. current care practice was evaluated using the nidcap nursery environment and care component template manual18 (templates) along with additional questions on infant holding and family participation taken from the nidcap nursery certification criterion scales.19 a five point rating scale (1=traditional care to 5=highly attuned nidcap implementation) was used. thirty cicu nurses were trained in the basics of nidcap and served as champions in the cicu. seven were additionally trained and reliable on use of the templates (>90%). background medical data was also collected. the impact of developmental care implementation was monitored through statistical process control methodology20 to observe changes in care prior to, during, and after nidcap implementation. plan-do-study act (pdsa) methodology was used to refine the process and intensify practice change. results over two years of intervention implementation, there have been no major adverse events related to nidcap care. template data was measured quarterly (77 templates, ongoing collection). evidence for significant improvement in mean scores from below the lower control limit to above the upper control limit was noted in bedding and clothing; supports for infant selfregulation; position, movement and tone; timing and sequencing of caregiving; and family participation. (figure 1) slight improvement was noted in environment and infant holding. results led to an individual task force to support environmental change, additional professionals recruited to dc team, and supplementary staff education provided. conclusion this qi study evaluates the efficacy of nidcap in the cicu for newborns with chd. evidence for significant improvement in mean scores of dc was noted in infant and family support. nidcap care efforts showed meaningful improvement in the cicu through education and staff support with ongoing need for qi science. our increased performance of developmental care is likely related to current qi efforts and dedicated developmental care team. references: 1. loffredo ca. epidemiology of cardiovascular malformations: prevalence and risk factors. american journal of medical genetics 2000,97(4):319-325. 2. fyler dc. report of the new england regional infant cardiac program. pediatrics 1980,65:377-461. 3. mahle wt, spray tl, wernovsky g, gaynor jw, clark bj. survival after reconstructive surgery for hypoplastic left heart syndrome: a 15-year experience from a single institution. circulation 2000,102(suppl 3):iii-136-iii-141. 4. jacobs jp, quintessenza ja, burke rp, et al. analysis of regional congenital cardiac surgical outcomes in florida using the society of thoracic surgeons congenital heart surgery database. cardiol young 2009,19(04):360-369. filling a significant gap in the cardiac intensive care unit (cicu): quality improvement using the newborn individualized developmental care and assessment program (nidcap) approach butler s1, hartwell l2, thornton j2, laronde m2, rachwal c2 1 psychiatry, boston children’s hospital, boston, ma usa 2 cardiology, boston children’s hospital, boston, ma usa doi: 10.14434/do.v13i1.29082 developmental observer • 2020 • 7 5. ferry pc. neurologic sequelae of cardiac surgery in children. american journal of diseases of children 1987,141(3):309-312. 6. marino bs, lipkin ph, newburger jw, et al. neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the american heart association. circulation 2012,126(9):1143-1172. 7. mussatto ka, hoffmann rg, hoffman gm, et al. risk and prevalence of developmental delay in young children with congenital heart disease. pediatrics 2014,133(3):e570-e577. 8. marino b s, p.h. l, j.w. n, al. e. neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the american heart association. circulation 2012,126:1143-1172. 9. wernovsky g. current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. cardiology in the young 2006,16(s1):92-104. 10. snookes sh, gunn jk, eldridge bj, et al. a systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. pediatrics 2010,125(4):e818-e827. 11. lisanti aj, vittner d, medoff-cooper b, fogel j, wernovsky g, butler s. individualized family-centered developmental care: an essential model to address the unique needs of infants with congenital heart disease. journal of cardiovascular nursing 2019,34(1):85-93. 12. daniels jm, harrison tm. a case study of the environmental experience of a hospitalized newborn infant with complex congenital heart disease. the journal of cardiovascular nursing 2015. 13. sood e, berends wm, butcher jl, et al. developmental care in north american pediatric cardiac intensive care uunits: survey of current practices. advances in neonatal care 2016,16(3):211-219. 14. als h. manual for the naturalistic observation of the newborn (preterm and fullterm): children's hospital, boston, mass. copyright, nidcap federation international, 2006,1981 rev. 1995. 15. als h, duffy f, mcanulty gb, et al. early experience alters brain function and structure. pediatrics 2004,113(4):846-857. 16. als h, duffy fh, mcanulty g, et al. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. j perinatol 2012,32:797-803. 17. kleberg a, westrup b, stjernqvist k. developmental outcome, child behaviour and mother– child interaction at 3 years of age following newborn individualized developmental care and intervention program (nidcap) intervention. early human development 2000,60(2):123135. 18. als h, buehler d, kerr d, feinberg e, gilkerson l. profile of the nursery environment and of care components. template manual, part i. boston: children's hospital; 1990, 1995. rev. 1997. 19. smith k, buehler d, als h. nidcap nursery certification criterion scales. boston: copyright, nidcap federation international;2009. 20. wheeler dj. understanding variation. the key to managing. 1993. the solid center line represents the average score for the entire time period (cy 2017 q3 – 2019 q2). the dashed lines represent upper and lower control limits, which correspond to ± 3σ from the center line. special cause is indicated by the red square dots above the center line, which suggest significant improvement in mean scores. figure 1. x-bar control charts showing quarterly mean scores for select nidcap template items 5 4 3 2 1 0 infant bedding and clothing m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 timing and sequencing of care delivery m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 supports of infant self-regulation m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 family participation m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 5 4 3 2 1 0 position, movement, and tone m ea n s co re 2017 q3 2017 q4 2018 q1 2018 q2 2018 q3 2018 q4 2019 q1 2019 q2 8 • 2020 • developmental observer objective our objective was to determine the impact of an early discharge with home care tube feeding program (edhc) – regular discharge on two-years corrected-age (ca) neurodevelopmental outcomes for preterm infants born between 25 and 35 gestational age (ga). secondary outcome measures were length of hospitalization stay, breastfeeding and first year hospital readmissions. methods this observational study compared 415 edhc preterm infants from toulouse university hospital, born between 2008 and 2015, and 3186 preterm infants of the epipage 2 study cohort born in all french newborn units in 2011. neurodevelopmental ages and stages questionnaire (asq) was used to assess neurodevelopmental outcomes. length of hospital stay, breastfeeding rates at discharge and six-months and hospital readmission rates during the first year were compared between the two groups. differences in the two populations characteristics were adjusted with multivariate multilevel regression analyses. results at two-years ca data on asq were available for 125 edhc and 2066 epipage 2 preterm children. edhc preterm singletons had 61% less risk to obtain a total asq score below threshold of 220 (or = 0.39 [0.32-0.48], p < 0.001), less risk to have communication abilities above threshold (or=0.42 [0.340.53] p<0.0001), fine motor skills above threshold (or=0.63 [0.51-0.78] p<0.0001), problem solving abilities above threshold (0r=0.53 [0.43-0.66] p<0.0001), and personal-social skills above threshold (or=0.64 [0.52-0.78] p<0.0001). length of hospital stay was nine days shorter for the edhc preterm infants (p<0,0001). edhc preterm children were more likely to be breastfed at final discharge (or = 3.59 [2.82-4.58], p < 0.001 for singletons and or = 2.25 [1.62-3.14], p < 0.001 for multiples), and breastfeeding was more likely to be continued over six months among those same children (or = 1.76 [1.34-2.32], p < 0.001 for singletons, or = 3.64 [2.10-6.32], p < 0.001 for multiples). finally, edhc children singletons had less risk to be readmitted in hospital during the first year (or = 0.65 [0.55 to 0.77], p < 0.001). conclusion the early discharge with home care program seems to improve neurodevelopmental outcome at two years of age, length of hospital stay and breastfeeding among preterm infants. it seems also to protect from hospital readmission during the first year. home care should be promoted in newborn intensive care policies. early discharge with home care tube feeding program benefits on two years corrected age neurodevelopmental outcomes, breastfeeding and first year hospital readmissions for premature infants losbar j1, arnaud c2, glorious i1, lescure s1, casper c1, montjaux n1 1 nicu, children's hospital, toulouse university hospital, france 2 umr 1017, inserm, toulouse university hospital france the who has designated 2020 the international year of the nurse and the midwife. nurses and midwives play a vital role in providing health and caring for mothers and babies . we would like to hear your stories and how nidcap has enhanced the role of nurses and midwives. doi: 10.14434/do.v13i1.29083 developmental observer • 2020 • 9 background in new south wales, the children’s hospital at westmead (chw) is part of a regionalised health system where infants who require intensive care for surgery in the newborn period are often transported to the chw via a newborn transport service or the woman is transferred for delivery at a high risk obstetric unit associated with a children’s hospital. this often means families are separated and there are competing needs of families, siblings and work commitments many kilometres from the grace centre for newborn intensive care (gcnic). in 2017, staff in the gcnic started a family support volunteer (fsv) program designed to help support parents when they need to leave the hospital for periods of time for other obligations which may include work, family commitments and/or geographical distance from the hospital. the priority remains the attachment of the infant to their parents and supporting the family through an individualised approach to care, frequent open communication and promoting opportunities for the parents to be involved in their infants’ care. aim to describe the implementation of a unit-based family support volunteer (fsv) program to support parents and their babies who are in the nicu for surgery. methods following recommendations from a nidcap advanced practicum in 2017, a program to support families in instances where it is not possible for them to always be present with their babies was implemented. twelve fsv’s were recruited from the hospital’s existing ward volunteer program. volunteers with prior experience working in hospital clinical areas and with an expressed interest in working in the nicu were each offered six to 12 hours per week in the fsv role. they were provided with a fourhour orientation program facilitated by a nidcap trainer and a social worker. training included basic skills for: the identification of infant stress signals; support and comfort through positioning; ways to hold and talk to the baby whilst offering support; and acknowledgement of the role of the parents within the nicu. families and babies were recruited to the program by the fsv using an opt in/opt out parent consent process; bedside documentation identified families who consented for inclusion. the project was endorsed by the executive director of nursing and had ethical approval through the clinical governance unit of the organisation. following a ten month trial, a survey was distributed to the volunteers, families and staff to gauge the success of the program and to identify if changes were required. the survey was distributed electronically by the program coordinator and consisted of ten open-ended and yes/no questions. the online survey was open for completion for four weeks. results ten families were surveyed regarding the fsv program. eight (80%) of respondents had used the program. all (100%) of families that used the program identified they would recommend the program to other families. one hundred percent of the fsv’s completed the evaluation. they indicated the majority of their time was spent comforting babies, followed by recruiting families to the program. ninety-two percent of staff (n=28) indicated a family support volunteer had assisted them by providing comfort to newborn infants under their care. all (100%) of the respondents found the support offered by fsv’s useful by reducing periods of crying and distress for babies. eighty-nine percent of staff identified the presence of fsv’s allowed them to complete other tasks. conclusion the family support volunteers provided an important role in the nicu by helping parents when they were unable to be present with their baby. the collaboration between the volunteers, families and staff has resulted in the needs of the babies being met to reduce crying periods and settling the babies following interventions. supporting families in the neonatal setting: it’s time to get creative! james nunez k, griffiths n, gittany h grace centre for newborn intensive care australasian nidcap training centre the children’s hospital at westmead, sydney, australia the 30th annual nidcap trainers meeting doi: 10.14434/do.v13i1.29084 10 • 2020 • developmental observer background/significance there is growing evidence that the premature infant and the developing brain, is influenced especially in the vulnerable window of time the infant is cared for in the newborn intensive care unit (nicu). it has been optimistically, yet incorrectly, proposed that healthy preterm infants without major complications eventually catch-up developmentally to term infants. research suggests as preterm infants mature, many remain increasingly disadvantaged on many neurodevelopmental outcomes. parental touch, especially during skin-to-skin contact (ssc) has the potential to reduce the adverse consequences of prematurity. ssc is an evidenced-based holding strategy that increases parental proximity and provides a continuous interactive environment known to enhance infant physiologic stability and affective closeness between parents and their infants. purpose the purpose of this research study was to examine bio-behavioral mechanisms; and specifically, to evaluate whether infants with higher oxytocin levels have more competent neurobehavioral functioning. methods this randomized cross-over design study used a three-day timeframe conducted in the nicu. the sample consists of 28 stable preterm infants (30 0/7 – 34 6/7 weeks gestational age between 3 -10 days old) and their mothers/fathers. after informed consent, each triad was randomly assigned to one of two sequences: maternal ssc on day one and paternal ssc on day two; or paternal ssc on day one and maternal ssc on day two. infants' and parents’ saliva samples for oxytocin and cortisol were collected pre-ssc, 60-min during-ssc, and 45-min post-ssc. infant neurobehavioral assessment using the nicu neurobehavioral network scale (nnns) was collected prior to hospital discharge. analysis/results data were analyzed using ibm spss version 25; descriptive statistics were used to describe demographic characteristic variables. paired t-tests were used to examine infant salivary oxytocin levels and infant neurobehavioral functioning. oxytocin release was activated for mothers (p<0.001), fathers (p<0.002) and infants (p<0.002) during skin-to-skin contact. there was also a relationship identified using pearson’s correlation between infant oxytocin levels and the infant’s neurobehavioral functioning. infant salivary cortisol levels were correlated to summary scales of infant stress behaviors and higher levels of disorganization. infants held ssc with their mother with higher salivary oxytocin levels had significant correlations to high self-regulatory summary scores (r=.544, p<0.003), and a strong negative correlation to excitability summary scores (r=.761, p<0.001). these infants with lower salivary cortisol levels had a strong negative correlation to handling summary scores (r=.594, p<0.025) and stress summary scores (r= -.534, p<.049). infants salivary oxytocin levels, when held ssc by their fathers, had strong correlations with higher self regulatory summary scores (r=.396, p<0.041), and a moderate negative correlation with infant lethargy summary scores (r=-.400, p<0.039). there was also a moderate correlation for infants held ssc by their fathers with higher cortisol levels to have higher lethargy summary scores (r=.459, p<0.016). conclusions despite advances in the nicu, premature infants remain at risk for adverse neurodevelopmental outcomes. this is an important step in exploring oxytocin as a potential moderator to improve infant neurodevelopmental outcomes and the effects of ssc on mothers, fathers and infants. nurses can use ssc as a strategy to activate oxytocin and enhance infant developmental outcomes. this study also supports, in conjunction with the views of the american academy of pediatrics, the value that all preterm infants and their parents should have the opportunity for ssc every day. keywords skin-to-skin contact; preterm infant; oxytocin; neurodevelopment; nicu network neurobehavioral scale statement of financial support: the authors have no financial relationships with commercial entities to disclose. acknowledgements this study was supported with funding from the national association of neonatal nurses, american nurses foundation (eastern nursing research society), sigma theta tau international (mu chapter) and the university of connecticut, school of nursing (toner funds). oxytocin release is strongly associated with premature infant behavioral patterns vittner d1,2, lawhon g3, d’agata a3,4, mcgrath jm6, young e1,4-5 1 university of connecticut, school of nursing, storrs, ct 2 wakemed health & hospitals, raleigh, nc 3 abington hospital-jefferson health system abington, pa 4 university of rhode island, kingston, ri 5 genetics and genome sciences, uconn school of medicine, farmington, ct 6 institute for systems genomics, university of connecticut, storrs, ct, doi: 10.14434/do.v13i1.29087 developmental observer • 2020 • 11 references 1. baley, j. (2015). skin-to-skin care for term and preterm infants in the neonatal icu. pediatrics, 136(3), 596-599. 2. conde-agudelo, a., belizan, j. m., & rosello-diaz, j. (2014). kangaroo mother care to reduce morbidity and mortality in low birth weight infants. cochrane database of systematic review, 4(4), cd002771. 3. cong, x., ludington-hoe, s. m., hussain, n., cusson, r. m., walsh, s., vazquez, v., ... vittner, d. (2015). parental oxytocin responses during skin to skin contact with preterm infants. early human development, 91, 401-406. 4. feldman, r. (2015). sensitive periods in human social development: new insights from research on oxytocin, synchrony and high-risk parenting. development and psychopathology, 27, 369-395. http://dx.doi.org/10.1017/s0954579415000048 5. feldman, r., & eidelman, a. (2003). mother-infant skin to skin contact (kangaroo care) accelerates autonomic and neurobehavioral maturation in preterm infants. developmental medicine and child neurology, 45, 274-281. 6. ferber, s. g., & makhoul, i. r. (2004). the effects of skin to skin contact (kangaroo care) shortly after birth on the neurobehavioral responses of the term newborn: a randomized controlled trial. pediatrics, 113(4), 858-865. 7. hack, m., taylor, h., schluchter, m., andreias, l., drotar, d., & klein, n. (2009). behavioral outcomes of extremely low birthweight children at age 8 years. journal of developmental behavioral pediatrics, 30(2), 122-130. 8. howson, c. p., kinney, m. v., & lawn, j. e. (2012). born to soon: the global action report on preterm birth. march of dimes, pmnch, save the children, who. 9. lee, h. j., macbeth, a. h., pagani, j. h., & young, w. s. (2009). oxytocin: the great facilitator of life. progressive neurobiology, 88(2), 127-151. 10. ludington-hoe, s. (2011). evidence-based review of physiologic effects of kangaroo care. current women’s health reviews, 243-253. 11. ludington-hoe, s., anderson, g., swinth, s., thompson, c., & hadeed, a. (2004). randomized controlled trial of kangaroo care: cardiorespiratory and thermal effects on healthy preterm infants. neonatal network, 23, 39-48. 12. marlow, n., hennessy, e., bracewell, m., wolke, d., & group, e. s. (2007). motor and executive function at 6 years of age after extremely preterm birth. pediatrics, 120, 793-804. 13. moore, e. r., anderson, g. c., & bergman, n. (2007). early skin to skin contact for mothers and their healthy newborns. the cochrane database of systematic reviews, 3. 14. mori, r., khanna, r., pledge, d., & nakayama, t. (2010). meta analysis of physiologic effects of skin to skin contact for newborns and mothers. pediatrics international, 52, 161-170. http:// dx.doi.org/10.1111/j.1442-200x.2009.02909.x 15. ross, h. e., & young, l. j. (2009). oxytocin and the neural mechanisms regulating social cognition and afflictive behavior. frontal neuroendocrinology, 30(4), 534-547. 16. vittner, d., casavant, s., & mcgrath, j. (2015). a meta-ethnography: skin to skin holding from the caregiver’s perspective. advances in neonatal care, 15(3), 191-200. 17. vittner, d., mcgrath, j. m., robinson, j., lawhon, g., cusson, r., eisenfeld, l., walsh, s., young, e., & cong, x. (2018). increases in oxytocin from skin-to-skin contact enhances development of parent-infant relationships. biological research for nursing, 20(1), 54-62. http://doi: 10.1177/1099800417735633 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 12 • 2020 • developmental observer aims and methods many people believe that maternal heartbeat sounds dominate the uterine environment and that the fetus, preterm and term newborn prefer them.1,2,3 this presentation critically examines the literature addressing this belief. results in 1962, lee salk, a psychiatrist in new york city, took a walk through the zoo and noticed a monkey holding her infant close to her body in her left arm “closest to her heart”.1,2 in 40 out of 42 subsequent observations, this one monkey did the same. with these and data from observations of newly delivered women and their infants, salk concluded that every primate is imprinted to their mother's heartbeat during infancy because each female holds her own infant on the left to experience “the pleasurable sensation of her own heartbeat reflected back from the infant”. thus, behavior due to each mother’s own imprinting passes it to the next generation.2,4,5 extrapolating lavishly, salk proposed heartbeat sounds as “the basis of all later learning” and that a “universal, ...biological tendency to seek heartbeat sounds has survival value [and] …involves mutual satisfaction.”2 salk’s work was influential in bringing the importance of maternalinfant closeness to professional attention.6 with numerous, unwitting errors salk tested the theory of lifetime heartbeat imprinting in a foundling (orphan) hospital2 by comparing tape recorded nighttime sounds emitted in whole rooms of healthy infants or toddlers. one room had broadcast heartbeat sounds and the other had “no sounds” (actually room sounds) or broadcast lullabies. the conditions were not masked, and baby nurse activities were not reported. because the number of infants making sounds was not determined, even one infant could account for all room sounds. the heartbeat condition always had fewer sounds (more sleep) than the control conditions. in 1968 and 1970 several obstetricians sought to extend heartbeat imprinting into fetal life by recording sounds in utero from unconscious women in labor.7, 8 although the results were determined by methodological errors, these are the studies that catapulted intrauterine heartbeat sounds into the popular culture where they remain stuck. the emotionally attractive idea of influential intrauterine sounds accounts, in part, for the dangerous practice of propagating all kinds of sounds in the uterus via speakers attached to the pregnant belly or inserted in the vagina. a responding study using appropriate methods and equipment did not find heartbeat sounds in the uterus of conscious laboring women with a spinal block but did find room and maternal voice sounds.9 studies of heartbeat recognition in infancy generally show preferential responding to them. however, the findings may be due to too great a difference between experimental and control sounds;10,11,12,13 heartbeat sounds may be preferable only because they are simple. but a newborn’s ability to make fine discriminations14,15,16,17,18 enables contrast stimuli differing only in rhythm. there is no clear preference indicating that newborns have not had exposure to heartbeats. (such a study has not been found.) giving up a long-held belief is difficult even when alternatives are substantial.19 thankfully, the alternative to intrauterine heartbeats is gold, namely mother's voice. it, and not prominent heartbeats, has been found reliably in the pregnant uterus of humans and ewes.9,20 well-known investigators conclude, “mother’s voice… [is] the most significant and common mode of potential acoustic stimulation in the uterus.”20 conclusions credible research shows that heartbeat sounds are not distinguishable in utero but that discriminable features of mother's voice are prominent – a necessary condition to eventual language acquisition. a broad, moral-of-the-story conclusion is that there is nothing quite like a tour through primary sources to examine a common belief. references 1. salk l. the effects of the normal heartbeat sound on the behavior of the newborn infant; implications for mental health. world mental health 1960,12:168-175. 2. salk l. mother’s heartbeat as an imprinting stimulus. transactions of the new york academy of sciences 1962 april 10, 1962:753763. 3. panagiotidis j, lahav a. simulation of prenatal maternal sounds in nicu incubators: a pilot safety and feasibility study. the journal of maternal-fetal and neonatal medicine 2010, 23:106-109. 4. hess eh. imprinting. science. 1959,130:133-141. 5. moltz h. imprinting: empirical basis and theoretical significance. psychological bulletin 1960,57:291-314. 6. salk l. the role of heartbeat in the relations between mother and infant. scientific american 1973,228:24-29. 7. bench jr. sound transmission to the human foetus through the maternal abdominal wall. journal of genetic psychology 1968,113: 85-87. 8. grimwade jc, walker dw, wood c. sensory stimulation of the human fetus. australian journal of mental retardation 1970,2:63-64. 9. richards ds, frentzen b, gerhardt kj, mccann me, abrams ra. sound levels in the human uterus. obstetrics and gynecology 1992,89:186 – 190. 10. panagiotidis j, lahav a. simulation of prenatal maternal sounds in nicu incubators: a pilot safety and feasibility study. the journal of maternal-fetal and neonatal medicine 2010,23(s3):106-109. 11. ullal-gupta s, vanden bosch der nederlanden cm, tichko p, lahav a, and hannon e. linking prenatal experience to the emerging musical mind. frontiers in. systematic neuroscience 2013,7:48. 12. rand k, lahav a. impact of the nicu environment on language deprivation in preterm infants. acta pædiatrica 2014,103:245-248. 13. doheny l, hurwitz s, insoft r, ringer s, lahav a. exposure to biological maternal sounds improves cardiorespiratory regulation in extremely premature infants. the journal of fetal and neonatal medicine. 2012;25:1591-1594. 14. shahidullah s, hepper pg. frequency discrimination by the fetus. early human development. 1994;36:13 – 26. the mysterious case of maternal heartbeat sounds philbin mk independent researcher, moorestown, nj, usa doi: 10.14434/do.v13i1.29088 developmental observer • 2020 • 13 15. moon c, lagercrantz h, kuhn pk. language experienced in utero affects vowel perception after birth: a two-country study. acta pediatrica. 2013;102:156-60. 16. decasper aj, fifer wp. of human bonding: newborns prefer their mothers’ voices. science, new series. 1980;208:1174-1176. 17. decasper aj, prescott. lateralized processes constrain auditory reinforcement in human newborns. hearing research. 1984;255.135-141. 18. spence m, decasper a. prenatal experience with low-frequency maternal-voice sounds influence perception of maternal voice samples. infant behavior and development. 1987;16,133-142. 19. kuhn ts. the structure of scientific revolutions: 50th anniversary edition. 4th ed. chicago, il: university of chicago press; 2012. pp.264. 20. abrams rm, gerhardt kj. (2000) the acoustic environment and physiological responses of the fetus. journal of perinatology. 2000;20(part 2): s31 – s36. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidencebased nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 photo by sulox32 (pixabay) photo by hbieser (pixabay) 14 • 2020 • developmental observer prior to the 1980’s infants in the intensive care nursery who demonstrated feeding problems were described as “poor feeders” with a “weak” or “poor” suck. there was no distinction available at that time to further describe those infants who were unable to orally take sufficient calories to grow. consequently, infants remained in the hospital for extended periods of time because of poor feeding. then the 1980’s saw the birth of the newborn individualized developmental care and assessment program (nidcap).1,2,3 caregivers were suddenly made aware of the stress cues, signs, and signals that preterm infants demonstrated as they were struggling with feeding. caregivers then began to provide infants with frequent “breaks” during feeding by removing the bottle from the mouth so that they could breathe, burp, or just rest after a very long sucking burst.4 this technique of providing “breaks” became known as external pacing. external pacing has always been based upon the cues, signs, and signals given by the infant to the caregiver during feeding and is a consequence of the relationship between the infant and feeder. since each caregiver has his/her own individual style and manner of positioning the infant; holding the bottle; and selecting the nipple, the infant may demonstrate different stress cues for each caregiver and the interpretation of these signs and signals is subjective on the part of the feeder. providing “breaks” during a feeding using this technique of external pacing has been most effective for older infants who are closer to term and who demonstrate longer sucking bursts such as with a continuous burst pattern of 10-30 sucks per burst with swallow and respiration occurring during the burst followed by only a brief pause.5 external pacing was developed as a cue-based technique to aid infants who were experiencing discomfort or distress during feeding and, since the 1980’s, has become very popular and is used effectively and frequently with both late preterm and sick term infants whose sucking bursts consist primarily of more than 10 sucks/burst. this intervention strategy has been effective because breathing appears to be the last function integrated into a successful feeding episode for the preterm infant.6 in the 1990's, with the development of the nomas® (neonatal oral-motor assessment scale), for the first time a distinction was made within the poor feeders; trained examiners were able to diagnose the suck pattern as either disorganized or dysfunctional.7 a disorganized suck was defined as “a lack of rhythm of the total sucking activity”8 which refers to the incoordination of suck, swallow, and breathe. a dysfunctional suck was defined as “an interruption of the normal sucking activity by abnormal movements of the jaw and tongue”.9 those infants who present with a disorganized suck are unable to self-regulate the suck/swallow/breath due to a lack of neurological maturation and respiratory support secondary to immaturity. being able to coordinate the pharyngeal swallow with respiration is a difficult task for many young infants. it is possible, however, for the caregiver to regulate the suck/swallow/ breathe for these infants during their feeding using imposed regulation, a diagnostic-based intervention strategy that may be implemented following a diagnosis of a disorganized suck on the nomas®. this does not refer to a specific technique but rather focuses on the goal for the infant and may be implemented differently for each infant. imposed regulation is most effective with young infants who demonstrate too much variability in the number of sucks per burst or a transitional suck.10 it is difficult for many young infants to inhibit the sucking movement so as to be able to breathe which often results in oxygen desaturation or spells of deglutition apnea.11 imposed regulation is based on the definition and description of the normal immature sucking pattern that is demonstrated by preterm infants. this normal pattern is characterized by very short sucking bursts of 3-5 sucks per burst followed by a pause of equal duration during which the infant breathes and/or swallows.5 this pattern is a burst/pause pattern in which bursts and pauses are of equal duration which requires that the infant stop the sucking activity to pause and breathe. when an infant is unable to do this the caregiver may implement imposed regulation for the first minute of the feeding after which the infant may be able to self-regulate. imposed regulation of the suck/swallow/breathe requires that the caregiver stop the transfer of liquid after three nutritive sucks and swallows to allow the infant to pause and breathe. if the caregiver attempts to build in a pause after five sucks/swallows it will most likely not be successful. some infants will already demonstrate deglutition apnea or oxygen desaturations after just three seconds of sucking and swallowing without breathing. once the normal immature burst-pause pattern has been imposed for one minute the infant may feed well for the remainder of the feeding. if the infant continues to be unable to self-regulate the caregiver may provide imposed regulation for an additional minute always giving the infant an opportunity to self-regulate after each minute of imposed regulation. the technique that is selected to implement imposed regulation is infant-dependent and should be carefully selected on an individual basis for each infant. some of the techniques that have been successfully implemented include: finger feeding; use of alternative utensils; tipping the bottle nipple; removing intervention strategies for the poor feeder in the newborn intensive care unit: external pacing versus imposed regulation marjorie meyer palmer ma, nlp, ccc-slp nomas licensed professional, speech pathologist founder/director, nomas international. www.nomasinternational.org doi: 10.14434/do.v13i1.29089 developmental observer • 2020 • 15 the bottle nipple from the mouth; tipping the baby so as to empty the bottle nipple; and pinching the nipple closed to stop the flow, just to mention a few. it is important to understand the differences in the purpose, goal, patient population, and implementation of these two intervention strategies that are used to improve oral feeding for infants in the intensive care nursery. an understanding of these two intervention strategies is necessary so that the infant’s needs can be individually addressed by prescriptive intervention. external pacing: 1) cue-based 2) used with older infants who demonstrate longer sucking bursts 3) provides breaks when infant is stressed, tired, fussy, needs to breathe, etc. 4) usually implemented by removing the bottle nipple from the mouth 5) once the infant has recovered the bottle nipple is re-inserted regulation: 1) diagnostic-based 2) used with younger infants who demonstrate too much variability in the number of sucks per burst or a transitional suck (nomas®) 3) provided for first minute of feeding; and re-introduced for one minute intervals as needed if infant is unable to selfregulate 4) follows a diagnosis of disorganized suck (nomas®) and prevents stress and discomfort during feeding 5) technique is individualized and infant specific imposed regulation is also an effective intervention strategy for those infants who have problems during the esophageal phase of swallow. the esophageal phase of swallow in infants has received less attention over the years than the oral phase of swallow (sucking). infants who have difficulty during the esophageal phase of swallow such as esophageal dysmotility; retrograde movement; or gastroesophageal reflux may have significant discomfort with feedings and are at greater risk of developing a sensory-based oral feeding aversion later.12 since the average suck/swallow ratio is 1:1 per one second material may be unable to clear the esophagus at that rate. when esophageal nt during feeding and could result in aspiration13. imposed regulation will allow only three swallows followed by a pause of equal duration during which the material has time to clear the esophagus. in addition, when imposed regulation is used for preterm infants during videofluoroscopic studies it will often serve to prevent aspiration that may occur secondary to inability to coordinate the pharyngeal swallow with respiration; fatigue; and esophageal dysmotility and/or retrograde movement. external pacing and imposed regulation are just two of the intervention strategies that may be used for infants who present with poor feeding. the nomas® also diagnoses those infants who have a dysfunctional suck for which very different intervention strategies and treatment techniques are recommended and are beyond the scope of this article that focuses on only two of the intervention strategies for infants who have difficulty with the coordination of suck/swallow/ and breathe. references: 1. als h, lawhon g, brown e, et.al., “individualized behavioral and environmental care for the very low birth weight preterm infant at high risk for bronchopulmonary dysplasia: neonatal intensive care unit and developmental outcome”. pediatrics 1986,78:1123-1132. 2. als h, gilkerson l, duffy f. et.al., “a three-center, randomized, controlled trial of individualized developmental care for very low birth weight preterm infants: medical, neurodevelopmental, parenting, and caregiving effects.” journal of developmental and behavioral pediatrics 2003,24:399-408. 3. als h, lawhon g, duffy fh, et.al., “individualized developmental care for the very low-birth weight preterm infant medical and neurofunctional effects.” journal of the american medical association 1994, 272:853-858. 4. vandenberg ka. “behavioral issues for infants with bpd” in: strategies for total patient care. neonatal network. petulama, ca, 1990,chapter 6: 112-152. 5. gryboski j. gastrointestinal problems in the infant. in: major problems in clinical pediatrics saunders: philadelphia, pa 1975:17-47. 6. vice fl. and gewolb ih. “respiratory patterns and strategies during feeding in preterm infants.” developmental medicine and child neurology 2008, 50(6):467-472. 7 palmer mm, crawley k, blanco i. “the neonatal oral-motor assessment scale: a reliability study”. journal of perinatology 1993,13(1): 28-35. 8 crook ck., “the organization and control of infant sucking. advances in child development and behavior 1979,14:209-252. 9 braun ma, palmer mm. “a pilot study of oral-motor dysfunction in ‘at-risk’ infants.” physical and occupational therapy in pediatrics. 1985/86, 5(4): 13-25. 10 palmer mm. “identification and management of the transitional suck pattern in premature infants.” journal of perinatal and neonatal nursing, 1993,7(1): 66-75. 11 hanlon mb, tripp jh, ellis re, et. al., “deglutition apnoea as indicator of maturation of suckle feeding in bottle-fed preterm infants.” developmental medicine and child neurology 1997,39(8); 534-542. 12 jadcherla sr. “gastroesophageal reflux in the neonate” clinics in perinatology. 2002 march, 29(1). 13 wolf ls, and glass rp. “clinical feeding evaluation” in: feeding and swallowing disorders in infancy: assessment and management. therapy skill builders, tucson, az. 1992,85-147. the 30th annual nidcap trainers meeting members of the 2018-2019 board of directors, portsmouth, new hampshire 16 • 2020 • developmental observer the republic of chile is a south american country occupying a long, narrow strip of land between the andes to the east and the pacific ocean to the west. chile is among south america's most economically and socially stable and prosperous nations, and a member of organisation for economic co-operation and development (oecd) with a highincome economy and high living standards. recently there have been demonstrations denouncing social inequality. in 2017 there were 219,186 births which is approximately 600 newborn babies born every day. approximately half of them are male. forty-two percent were born in santiago, the capital of chile. the child mortality rate is 7.1% with 41.2% occurring in the first day of life and 36% between 1-28 days. the neonatal mortality rate fell around 5% in one year from 2016 to 2017. the total fertility rate was just 1.6 in 2017 below average generational rate. at present, there are many immigrants, with around 10% of births occurring in this group. chile has a mixed public and private health system with approximately 70% of the population using the public health system, with the remaining 30% accessing the private health system. neonatal intensive care occurs in both public and private hospitals. most private neonatal intensive care units (nicu) have 24 hour free access for parents. unfortunately this does not happen in the public system where there is a lack of staff. nevertheless, i have been working with different professionals (midwives, ot, therapist) training and making changes. the clinica las condes (clc) where i work, is a private hospital where parents can stay the whole day with their babies, and siblings and grandparents are also welcome. we have many preterm babies many of whom are twins since this is a referral hospital for infertility treatments and high risk pregnancies. since 2008 we have been working with the nidcap concept in our unit. parents are encouraged to provide the care for their babies and we have an active skin to skin program. the preterm parents corporation, named neovidas, has been working with us to support the preterm parents at the clc & hospital santiago oriente and is open to offer help to other parents. they work actively with the health minister and have connections to parents abroad. each november they organize different activities for families and professionals to celebrate world prematurity day. every year i work with midwives, training new people and doing refresher courses for the other staff. for the past five years ninoska cancino, midwife (nidcap professional) and i have been working with different universities, pediatric societies and nurse’s colleges providing training programs in developmental care within the country. most of the health care professionals who have attended these programs have expressed an interest in foundational programs for developmental care such as family and infant neurodevelopmental education (fine). the clinica las condes is unfortunately not a nidcap training center but we work with this concept. our unit is the only one in chile that has certified nidcap professionals on staff. if requests for nidcap training are received i recommend for them to apply to argentina or spain for training. presently, we are working together with other spanish speaking trainers who can help us spread the nidcap philosophy. global perspective of developmental care – chile marcela castellanos, md pediatrician, neonatologist, nidcap professional, clinica las condes & hospital santiago oriente – dr luis tisne clinica las condes hospital santiago oriente “dr. luis tisné brousse doi: 10.14434/do.v13i1.29092 developmental observer • 2020 • 17 fa m i ly v o i c e s column editor – debra paul, otr/l my little warrior tracey azzopardi going to be a mum i was always focused on my career. after six years from working overseas in hong kong, shanghai, and london, i came home to sydney to have a baby. having a baby was the one thing that i had always wanted. at 43 and after four rounds of ivf with an anonymous donor, i was ecstatic to find out i was finally pregnant. i was going to be a mum. 23 weeks~the roller coaster begins where to begin. it was still early. i hadn’t yet started ante-natal classes or visited a maternity ward. i still had plenty of time to get ready for childbirth, or so i thought. little did i know it was the start of an unexpected roller coaster journey of uncertainty and emotions. while on my way to work 23 weeks into my pregnancy, i didn’t feel right so i visited my obstetrician. several hours later with ruptured fetal membranes, my doctor explained that it was vital i deliver at a hospital with a neonatal intensive care unit. thankfully westmead hospital had a bed because later my baby would need the grace centre for newborn intensive care at the children’s hospital at westmead. i was transferred by ambulance to the westmead hospital which was only one street away and taken to the delivery suite. the following day i had an ultrasound. i could not see the monitor that the three doctors were looking at. clearly, something was wrong. my baby had moved from being ready to deliver to being transverse and the umbilical cord wrapped around my baby’s arm. my baby could not move. that afternoon one of the fellow’s from the newborn intensive care unit (nicu) came to sit with me. she was a kind and gentle doctor who took the time to listen and help me understand what was going on and the options available. the doctor explained the probability of survival and the ramifications of a delivery at such an early age. we were at 23 weeks and one day, and every day counted. what was going to happen next? i was told that one of three things would happen: contractions would start, my baby’s heartbeat would slow, or infection would set in as there was not much amniotic fluid. i was started on antibiotics and my baby’s heartbeat was checked three to four times a day. thank goodness for my mum who was with me every day. confined to bed, i hung on to hope and stayed focused on the positive. delivery at 24 weeks seven days later while lying in the hospital bed, i experienced rigors and within minutes, several members of the medical team surrounded my bed. antibiotics, steroids and vitamin k were injected, blood tests were taken, and i was put on oxygen. my obstetrician and i had a very quick discussion. as much as i wanted to experience childbirth, the only thing that mattered was giving my baby the highest probability of survival, which meant my baby being delivered by emergency caesarean. before i knew it, i was in the theatre and there were people everywhere. it’s a girl! i woke midday the following day. the nurse asked me if i knew where i was and i said yes. then i asked, “my baby…is my baby alive?” her answer was yes. i then asked, “what did i have?” she responded with “you had a girl.” it was a surreal and joyous moment that i will never forget. meeting my baby taken by wheelchair to meet my daughter, i was excited and scared at the same time. she was born at 24 weeks and 1.5 hours weighing 590 grams and required resuscitation and intubation at birth. being wheeled into the nicu and meeting my baby was overwhelming as she was in a humidicrib and there were wires and tubes everywhere with multiple pumps and machines beeping. tracey azzopardi with her daughter, matilda doi: 10.14434/do.v13i1.29091 18 • 2020 • developmental observer my baby was so tiny. it was hard to believe. the nurse explained containment holding and where i could place my hands on my daughter. needless to say, i did a lot of containment holding. picking a name upon meeting my baby girl, giving her a name was an easy choice…matilda. the meaning of her name is quite significant and means might and strength in battle. this tiny human had many battles ahead. on-going challenges in the following four weeks after matilda’s birth, she faced serious breathing and lung issues. her x-rays showed lungs that looked like they were covered in clouds and she was given two rounds of steroids to clear them. matilda’s heart valve had not switched over until a day after her second round of treatment. everything seemed to take a little bit longer. too fragile to hold, for the first three weeks of matilda’s life i placed my hands gently on her through the crib’s doors. after three weeks, i held matilda for the first time for one hour. it was our first skin to skin and it was sensational. as matilda got stronger, i was able to hold her for longer periods. skin-toskin or kangaroo care was the most precious time i had with matilda. transferring matilda out of her humidicrib was done with extreme care. it took a bit of organising and required three nurses. as soon as i would arrive in the morning, i would touch base with matilda’s nurse, find out how she was overnight, and what was scheduled for the day. together the nurse and i would figure out the best time for skin to skin. during skin to skin, matilda’s breathing would always be at its best with minimal destats. i made it my mission to do as much skin to skin as possible. our record was 6.5 consecutive hours. typically, i would usually do 3 hours each day. surgery on day 28 i arrived to find out that matilda needed a surgery consult. all i heard was the word surgery. they were going to cut my tiny baby open. preparations were underway without delay and matilda was transferred to the grace centre for newborn intensive care at the children’s hospital, westmead in sydney. a battery-operated motor was attached to the humidicrib to power the cpap and pumps, and matilda was transferred via a tunnel that connected the two hospitals. grace is a surgical nicu, and without a doubt one of the best in the country. upon admission, tests, x-rays, examinations and so on, a surgical team arrived. the medical team was standing two deep around matilda’s humidicrib. then the surgeon arrived and examined matilda and there was rigorous discussion. he introduced himself and explained that after examining matilda he could not guarantee, however was quite sure he knew what was going on and that there were no tests to confirm it. the only thing that could be done was to go in and have a look. i listened carefully. the surgeon was very clear. there was no doubt how serious it was as matilda was so distended. she was 28 days old and weighed 790 grams and had already been through so much, yet needed this surgery urgently. once the surgery was over the surgeon confirmed that matilda had nec or necrotising enterocolitis and showed me a diagram. in total, 28 centimetres or approximately a third of matilda’s bowel was removed. progress measured in baby steps post-surgery the darkest green bile kept coming out of matilda’s oral venting tube for weeks. one of matilda’s neonatologist kept reminding me, matilda runs on her own time table and we need to patient with her. i’ll always be grateful for the generosity of his understanding and ability to explain things and manage my high expectations. two weeks after matilda’s surgery, she started on one millilitre (ml) of breastmilk over four hours. every two days we slowly increased her milk by 0.5 mls per hour. it was a slow progression. when matilda’s target was reached, we then had to transition from the four-hour cycle via continuous pump to regular feeds every four hours that i would be able to do via gravity feeding at home. taking each day as it comes two steps forward and one step back was the term commonly used. taking one day at a time is the only way to go and not too fragile to hold, for the first three weeks of matilda’s life, tracey placed her hands gently on her through the crib’s doors developmental observer • 2020 • 19 get ahead of yourself. i refused to go online and read blogs etc. if i had a question, i would put it in my phone and ask the appropriate person on matilda’s medical team. attending morning and afternoon rounds meant i was always up to date and knew what was going on. it was important to learn how the nicu worked, who was who, and how to find out information or escalate concerns. a month before coming home, matilda’s nose was finally big enough to have the smallest size nasogastric tube (ng) fitted. without any tubes in her mouth, during skin to skin with the support of the speech therapist and lactation consultants, we persisted in encouraging matilda to latch on and breastfeed. they would put the stethoscope behind her ear, counting how many sucks and swallows she had. matilda was sucking, but rarely swallowing. our plan was to keep trying. i really wanted to breastfeed believing it would be the best thing for matilda’s gut and growth as she was still very tiny. my persistence was worth it as i breast fed matilda until she was 17 months when matilda was able to use a sippy cup. developmental rounds and individualised developmental care i would be so disappointed if i missed the developmental rounds. there were usually three specialists who would assess each baby and give recommendations to the nursing team. what may seem like something small to some, the recommendations for matilda had a significant impact on her. i was approached about carrying out an assessment to review and develop an individualised developmental plan for matilda. this was exciting. anything that we could do to help matilda to make her as comfortable as possible and that supported her progress was a great thing. a group of professionals going through training observed a nurse and i doing matilda’s cares. as i was shown, i would always start from matilda’s head and work my way down to her feet. the written report i received following the observation was brilliant. when changing matilda’s nappy and undoing the velcro tabs, her body would flinch and her facial expression would change. when these observations were shared in the report and i read it, i modified the way i changed matilda’s nappy. the report provided instructions for all of matilda’s team to follow. one of the trainees on the developmental team suggested i prepare a shorter version of the report as if it was written by matilda. it was then attached to the end of her bed for all of her nurses to follow. reflections from our nicu experience there was a night or two when i got all the way to the car park and had to walk back to the nicu. leaving your baby is a challenge. the best thing to do is focus on getting home, eating and sleeping, staying as healthy as possible and seeing and holding them the next day. helping my daughter’s voice be heard being matilda’s advocate and voice…that is what mums do, right? it is a balancing act. being respectful of the medical team is really important. at the end of the day or evening, you have to leave the nicu and leave your baby in the care of this team and trust is really important. going home after spending 161 days (5 ½ months) in the nicu, matilda was discharged in early december 2017 weighing 3.3kg. for ten months following discharge matilda required home cpap and was connected to a mobile corometrics monitor for obstructive sleep apnoea whenever she was sleeping. the year following discharge was full of appointments and therapy. the combination of attending a feeding clinic, physiotherapy and occupational therapy were all very beneficial. we put everything we had learnt in the nicu into practice at home. she will have glasses in the near future. matilda has chronic lung disease and will continue to be monitored. whilst matilda is delayed and in the low average range for her language, cognitive and gross motor skills, we continue to focus on these areas and i have no doubt that she will continue to improve. she is making great progress with her fine motor skills. matilda loves books and has them everywhere. we do a lot of reading. gratitude there is no doubt matilda is alive and doing so remarkably well today due to the care she received from the moment i found out she would be arriving early, and throughout her entire journey. i remain forever grateful and indebted to every person who cared for matilda and for their amazing skills, patience and empathy. they were a dedicated team of people who worked together and truly cared for matilda. matilda is now two and a half and is a very resilient, determined, happy and joyful child, who has made amazing progress and continues to thrive. she is truly loved and i am fortunate to have such an amazing daughter. we thank tracey azzopardi, matilda’s mother, for sharing her story, and matilda’s journey with us. tracey says matilda is a very resilient, determined, happy and joyful child 20 • 2020 • developmental observer survival rate for preterm infants is continuously improving thanks to advances in medical science. despite this, preterm birth is still a challenge worldwide. the treatment for preterm and ill newborn infants is very complex and it requires specially trained healthcare professionals. in europe, there is variation in the provision of care for preterm and ill newborn infants at a national, regional, and hospital level including the education available for healthcare professionals. moreover, national guidelines, when they do exist, vary from country to country. the european standards of care for newborn health (escnh) is an interdisciplinary collaboration project that addressed the disparities in provision and quality of care through the development, and now publication of standards of care for key topics associated with preterm birth and neonatal morbidity. eleven areas were selected to address, the so-called topic expert groups or teg (see figure 1), in which the standards were developed and looked beyond (medical) care of infants and included nicu design, follow-up and continuing care, infantand family-centred developmental care, and ethical-decision making. escnh is a true patient-centred project, and for the first time, patients were involved in every step in the development of standards. in collaboration with parent representatives from more than 30 countries, there were about 220 healthcare professionals from different practice areas involved and worked over several years to create the standards. the standards were launched at the european parliament in brussels in november 2018. by that time, 108 healthcare societies and associations as well as 50 parent organisations accepted the european foundation for the care of newborn infants (efcni) invitation and officially supported the newly developed standards. the escnh help support the rights of the child of the un convention assembly by serving as a reference for the development and implementation of standards and guidelines on a national and international level. i personally took part on the standard in infant and familycentred developmental care (ifcdc). the role of the topic expert group on ifcdc was defining practice standards for the implementation of newborn care centred around the infant and his/her family in order to support optimal health and development of preterm and ill newborn infants. this standard is divided in another 10 sub-topics and i was involved mainly in the “education and training for infantand family-centred developmental care” section. my group was comprised of a multidisciplinary team from different countries in europe and we worked together, exchanging hundreds of emails over several years. our aim was developing educational pathways that ensure that all nicu professionals have educational and training opportunities to develop the knowledge and skills needed to implement high quality infant and family-centred developmental care, which includes guiding of parents as primary caregivers. it was a huge task and incredibly satisfiying. i had the chance to work with amazing people that included sharing ideas and reflections. each email shared was an opportunity to recalibrate my attention on preterm infants and their parents who i care for in my nicu, and i learned a lot. all the nidcap professionals in my team in modena, and myself, are working to spread the european standards of care for newborn health in all the nicus in italy. this project and the work that came out of the developed european standards of care for newborn health is a powerful tool to provide all preterm infants and their parents with the best possible care. european standards of care for newborn health natascia bertoncelli developmental therapist, nidcap trainer, neonatal intensive care unit, university hospital of modena, modena, italy figure 1. the 11 topic expert groups doi: 10.14434/do.v13i1.29090 developmental observer • 2020 • 21 30th annual nidcap trainers meeting below are some images from the 30th annual nidcap trainers meeting held in portsmouth, new hampshire, usa. thank you to our photographer – dr susannah silva from porto, portugal. 22 • 2020 • developmental observer bodies of knowledge, like ‘flesh-and-bone’ bodies, work best when they are in balance. today, many bodies of biomedical knowledge are out of balance. for example, the body of knowledge comprising mechanisms of pain and pleasure is large and detailed on the side of pain mechanisms, but knowledge about how pleasure works is sparse and incomplete. similarly, we study depression more than happiness. in all, we know much more about processes of sickness than of health. there is a pervasive lack of balance! biomedical knowledge has distinctly practical, “applied” importance. this kind of knowledge is created, tested, translated, vetted and then sent off to work in hospitals, clinics and other healthcare settings. on its way to the hospital, imbalances appear. why are bodies of knowledge so lopsided? behavioral epigenetics, a field that is nicely introduced by the review article, “implications of epigenetics and stress regulation on research and developmental care of preterm infants“ (montriosso & provenzi, 2015) provides some insight into the way we define our areas of study and how this shapes our questions and hence the subsequent shape of our bodies of knowledge. it’s a fine paper, worth reading and understanding. behavioral epigenetics recently burst onto the science scene as a major disrupter. it’s great to shake things up, and epigenetics does it by challenging the “conventional wisdom” about the relations between genotype and behavior. in the process, epigenetics is re-writing basic rules of inheritance, by making obsolete phrases such as “genetic programs”, or “there are genes for . . .”, or “it’s in their dna to . . .”. the way that epigenetics forces a change in our vocabulary and thinking is that it reveals mechanisms whereby gene expression changes, without the actual genome changing! this is accomplished, as the authors explain, via molecular mechanisms that act “above” the genome (hence epi-genetic). several such mechanisms are now known. one of the most commonly studied epigenetic mechanisms is methylation, a process that “silences” gene expression at specific sites, usually within regulatory regions of gene where a methyl group essentially grabs onto a site and prevents dna → rna transcription. in contrast, histone modification is a molecular mechanism that promotes gene expression. histone modification involves an acetyl group acting to unwrap a histone (protein) “tail” in a way that exposes dna to transcription factors and thus facilitates gene expression. again, montriosso and provenzi do an admirable job describing and illustrating some of these molecular events that comprise the epigenetic “marks” that can be assayed after various laboratory manipulations of an animal or life events in humans. noted in the target article is a well-known example of epigenetic change. the research originated in the mcgill university laboratory of michael meaney, where he and a group of associates analyzed different styles of maternal behavior in rats. some mother rats (also called “dams”) spent lots of time licking and cuddling their infants whereas others reared healthy babies but provided much less licking and cuddling. although equivalent in growth and viability, the offspring of the attentive dams grew up to modulate their stress reactions and display resilient recovery from stress far faster than the offspring of the inattentive dams. when they became mothers, the female offspring of the two types of rat dams (attentive and inattentive) displayed similar styles of mothering. mothering style and its effects on offspring had been “inherited”. shocking to some, however, were the results of cross-fostering experiments: when attentive moms reared the babies of inattentive moms, those offspring showed the calmer, stress resilient demeanor whereas offspring of attentive dams reared by inattentive mothers developed into stressedout, poorly regulated rats. moreover, when these females became mothers, their mothering style was that of the foster dam, not the biological mother! yes, mothering style was “inherited” across the generations, but not via the mother’s genes (see champagne & curley, 2009; meaney, 2001). it was possible to examine neurons in various brain regions of the offspring reared by dams with the distinctly different mothering styles. one dramatic difference was the density of glucocorticoid receptors (grs) on the neurons in the hippocampus, a brain structure associated with emotion and learning. the studies surrounding this finding indicate that mothering styles by the rats primed the stress responses (described in the target article in terms of the hypothalamic-pituitary-adrenal or hpa activity) of the infants. the baby’s stress responses to the maternal environment, whether from the biological or the foster mom, altered the gr density on the hippocampal neurons and, as a result, altered responses to their own stress hormones. the researchers have found increased methylation at the sites responsible for gr production, pointing the way to the epigenetic shaping of the offspring’s brain. there are now studies in humans showing results compatible with this rat research. for instance, lester et. al. (2018) studied healthy, 5-month-old, term infants and their mothers, who either did or did not breastfeed exclusively to the time target article: montirosso, r. and provenzi, l. (2015) implications of epigenetics and stress regulation on research and developmental care of preterm infants. jognn, 44, 174-182. doi: 10.11 11/1552-6909.12559 a funny thing happened on the way to the hospital jeffrey r. alberts indiana university, nfi science committee, associate editor for science developmental observer • 2019 • 22 t h e s c i e n c e d e s k doi: 10.14434/do.v13i1.29094 developmental observer • 2020 • 23 of the experiment. they hypothesized that the breastfeeding relationship would serve as a maternal behavior difference to parallel the two groups dams used in the rat research. lester’s group staged a slightly challenging mother-infant interaction (a “still face” test) and measured the babies’ stress reactivity via salivary cortisol. they also measured dna methylation in the gr gene region of the babies’ dna from cheek swabs. breastfeeding by the human babies was associated with lower dna methylation and decreased cortisol reactivity. the results provided a striking replica of the rodent studies! there’s another stunning aspect of epigenesis: epigenetic changes can be inherited! epigenetic effects are shown to be associated with specific physiological or behavioral traits, typically caused by different types of experience within a lifetime, and then the same epigenetic marks are inherited from the adult via the dna in the gametes, so that the epigenetic changes are passed to their next generation. but the dna content of the cells has not been modified. this is transgenerational inheritance with no genetic change! it’s a new view of inheritance. it is a privilege to write a commentary about a new area of knowledge creation. hopefully, i’ve conveyed a sense of excitement about epigenetics and inspired you to read the montriosso and provenzi paper, and maybe more on the topic. nevertheless, i’ve also lamented an imbalance in biomedical knowledge. i argued that there has developed a culture that emphasizes studying sickness more than understanding health. this imbalance is perpetuating because each preliminary discovery leads to related questions which favors more and deeper questions about sickness and not about health. the field of behavioral epigenetics is nascent and just taking shape. already, the weight of the evidence-based knowledge is accumulating on the side of toxic stress, effects of poor parenting, bad diet, and other negative factors and forces. framing the issues this way naturally leads us to seek ways to prevent or undo harm. yes, there is merit to this, but i believe there is more to promoting health than blocking or remediating damage. there are paths to travel, on which we can acquire knowledge that can deepen our ability to guide, facilitate and maintain healthy development. many of these paths course through nicus. imagine bodies of knowledge growing and developing on their way to being implemented in the hospital. what if we not only understood how surges of adrenal hormones in combination with painful stimuli silence genes that are part of diminished stress reactions, but we also mapped the epigenetic marks of resilience to adversity, or we could reveal the ways in which nidcap facilitates histone modifications associated with a premie’s ability to self-regulate? what if we discovered that processes labelled as remedial or protective are identical to formative accretions in normal development? we might discover that a funny thing happened on the way to the hospital: we shifted emphasis and we lost sight of healthcare and instead saw mainly sickcare. perhaps we can use behavioral epigenetics as a field with new pathways, ones that balance studies of health and disease. indeed, there are instances and insights into the basis of healthful development. these appear in some studies of mother’s milk and the development of immune competence, we see examples across the landscape of microbiome research, and in some studies of oxytocin and related neuropeptides in development. the promotion of “nurture science” (bergman et al., 2019) is encouraging. indeed, about a decade ago, professor heidelise als wrote an instructive and insightful article in the developmental observer (als, 2011), in which she foresaw the important promise and implications of epigenetics on nidcap. i recommend reading montriosso and provenzi (2015) along with als (2011). to continue your education, go on to read the remarkable and beautifully crafted book by david s. moore (2015) on behavioral epigenetics. references 1. als, h. (2011) lamark, darwin and the science of nidcap: epigenetics in the nicu. developmental observer, 4 (2), 1-4. 2. bergman, n.j., ludwig, r.j., westrup, b. welch, m.g. (2019) nurturescience versus neuroscience: a case for rethinking perinatal mother-infant behaviors and relationship. birth defects research. 1-18. https://doi.org/10.1002/bdr2.1529 3. champagne, f. a., & curley, j. p. (2009). epigenetic mechanisms mediating the long-term effects of maternal care on development. neuroscience and biobehavioral reviews, 33(4), 593–600. doi: 10.1016/j.neubiorev.2007.10.009 4. lester, b.m., conrad, e., lagasse, l.l., tronick, e.z., padbury, j.r., marsit, c.j. (2018) epigenetic programming by maternal behavior in the human infant. pediatrics, 142(4), e20171890 5. meaney, m.j. (2001) maternal care, gene expression, and the transmission of individual differences in stress reactivity across generations. annual review of neuroscience, 24, 1161-1192. 6. moore, d.s. (2015) the developing genome: an introduction to behavioral epigenetics. oxford university press. https://www.amazon.com/developing-genome-introduction behavioral-epigenetics/ 23 • 2019 • developmental observer nidcap care in the moment u se d w ith p er m is si on sibling care 24 • 2020 • developmental observer the department of neonatology at tübingen university hospital has the capacity of 51 beds, 17 for each level of newborn care. german neonatology, similar to that in the us, is rather decentralized, so that our department, although admitting 120-130 infants <1500 g (vlbw)/year, is among the 6 largest in the country. four years ago, binding regulations on staffing were introduced in germany, so that vlbw infants now receive 1:1 or at least 1:2 nursing care (depending on illness severity), which has been very helpful for nidcap work and implementation. our heritage-listed hospital (built in 1931) is the first ever built in the famous “bauhaus style*”, but this also means that no changes could be made to its outer structure. infants admitted to our department are therefore cared for in bedrooms with 2-5 cots/room with quite limited space, which often represents a big challenge for staff and parents. on an academic level, tübingen holds one of only 3 academic chairs in neonatology in germany, meaning that it is comparatively free in deciding on its budget and workforce allocations. for introducing nidcap, this certainly helped in assigning parts of this budget to fund our goal of becoming a nidcap training center. we are convinced that individualized newborn care, focused on the infant’s development and integration of its family, is crucial in achieving a good outcome for both the baby and his/her family. thus, we are grateful that heidelise als, our nidcap master trainer, helped us pave the way to becoming the first german-speaking nidcap training center, which we opened on world prematurity day 2015. by now we have 2 certified trainers heading a multidisciplinary team of 8 nidcap professionals, including nurses, physicians, speechand physiotherapists, who all have a certain number of hours per month available to do nidcap observations and to provide guidance for the families and the team. through our work with heidelise als we learned to value individual observation sessions, which we carry out every 1-2 weeks in all infants born at <28 week gestation. these observations form the basis for our focus on the experiences and histories of each individual infant and its family. in a stepwise fashion, we recognize nidcap training centers around the world nidcap training center tübingen, germany nidcapteam tübingen (2015) from left to right kerstin gründler (md, nidcap-professional), tabea tjhen (speach therapist, nidcap professional), birgit holzhüter (md, nidcap-trainer), natalie wetzel (rn, nidcap-trainer), rebekka bauer (rn, nidcap professional), prof. heidelise als (nidcap master trainer), ina schmollinger (rn, nidcap professional), eva jochim (rn, nidcap professional), susi wagner (rn, nidcap professional) © n at al ie w et ze l doi: 10.14434/do.v13i1.29093 developmental observer • 2020 • 25 each baby‘s strengths and vulnerabilities as well as his/her current developmental goals and support him/her in the next steps. the knowledge gained from these observations, including the current goals of the infant, are always reported back to parents and staff in written form in addition to being reported during weekly rounds with our head of department. by observing the infants we became aware early on that implementing nidcap and sharpening our view on the needs of the preterm infants and their families would be associated with a variety of changes to our daily work. we therefore established a nidcap steering committee, comprising medical management as well as front line nursing staff and nidcap professionals and trainers, to introduce sustainably and effectively the necessary measures for an individualized, developmentally supportive and family integrated philosophy of care. it has always been our concern to integrate the staff of our units into the ongoing process to benefit from their creativity and knowledge. throughout the last 10 years our staff, in cooperation with the nidcap team, developed for example new incubator blankets and an innovative positioning aid to assure a comfortable environment for the infant. moreover, regular training and reflection sessions made it possible that the routines on the ward became more flexible. amongst other things, we individualized the time for “kangaroo care” or adjusted routines like blood taking or ultrasound scans to the rhythm of the baby whenever possible. feeding issues, particularly breastfeeding, have received our attention for many years now. in 2015, a multi-disciplinary working group developed a feeding guideline, adapted to the requirements of our department. the aim of this guideline is to support an early breastfeeding relationship with the baby and positive feeding experiences, either at the breast, bottle or via a feeding tube. last year we established additional weekly feeding rounds that are supported by our breastfeeding consultants. we now increasingly focus on aspects of care related to the integration of the family. in the course of this, we started earlier this year with parents attending our ward rounds once a week. in these particular rounds the parents, not the professionals, report on their baby’s present situation as well as his or her next steps. our goal is to acknowledge the parental competence and experience of parents as the primary caregivers of their baby to complement our professional view and thus actively involve them in all decision-making and care-planning. we are convinced that this strongly affects parental self-confidence and strengthens the role of the parents within the unit. in 2021, we expect to open an additional unit in a new building adjacent to the current nicu that is based on the swedish karolinska model, where parents can live in apartments that are only separated by a thin wall from their baby receiving intensive care. the babies’ care space is designed as a single room. we hope that a more intimate environment accompanied by the proximity between baby and parents and provision of care that is reliably based on nidcap principles will contribute to the healthy development of our little patients and their families. members of our very active parents’ association are involved in the planning of this new unit. they help us to understand the situation and the needs of parents better and support us with regular feedback and ideas for improvement. all in all, our progress in the last 10 years wasn´t always easy and there were multiple setbacks, but from today´s point of view each step, even the smallest one, was and will be a step in the right direction, a step to improve the future of preterm infants and their families. thus, we simply keep on moving forward. susi wagner observing an infant to learn about the strengths, vulnerabilities and current goals of the infant *the bauhaus style was marked by the absence of ornamentation and by harmony between the function of a building and its design. © u ni ve rs itä ts kl in ik um t üb in ge n © n eo na to lo gi e tü bi ng en 26 • 2020 • developmental observer developmental observer the official newsletter of the nidcap® federation international developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ 2020 vol. 13 no. 1 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “averages… seduce us away from minute observation.” florence nightingale greetings from the editor as we start a new decade the future looks bright for the developmental observer. we have expanded our editorial team to include debra paul as column editor for the family voices and maria maestro lopez who brings a european perspective. we took the opportunity to meet as a group together with rob catalano, graphic designer. this face-to-face meeting gave us the opportunity to discuss future directions for the developmental observer and develop a plan. in this issue we have the abstracts from the 30th annual nidcap trainers meeting held in portsmouth, new hampshire, usa. the abstract topics highlight the breath of nidcap work from the science of oxytocin, implementation strategies for programs of reading, use of volunteers, the cicu to refugee heath. the abstracts and other articles in this issue now have unique dois that will enable others to locate the articles easily through the iu scholarworks platform. we highlight the nidcap germany training center tubingen which hosts the next trainers meeting in october, please note the call for abstracts in this issue. you will be challenged by marjorie palmer to consider pacing for poor feeders, natascia bertoncelli takes us through her involvement with the european standards and highlights this valuable resource. with our regular features from the science desk jeff alberts explores the fascinating world of epigenetics and nidcap work and debra paul introduces us to the little warrior of matilda as told be her mother tracey. we learn about developmental care in chile as we explore the globe in each issue. i welcome your feedback and suggestions for future content. i would also like to receive manuscripts on any aspect of nidcap work to we can all benefit from innovation and experiences. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia table of contentseditorial ...................................................... 1 abstracts .................................................... 2 intervention strategies for the poor feeder ....................................................... 14 global perspective of developmental care – chile ............................................. 16 family voices .......................................... 17 european standards for newborn health ....................................................... 20 the science desk .................................... 22 nidcap training centers around the world ........................................................ 24 nidcap on the web ................................ 28 issn: 2689-2650 (online) do 13:2 full issue doi: 10.14434/do.v13i1.29113 abstract edition kaye spence, am editorial team (from left): sandra kosta, kaye spence, rob catalano, gretchen lawhon, debra paul, dianne ballweg, jeffery alberts, maria maestro lopez, deborah buehler. doi: 10.14434/do.v13i1.29076 nidcap federation international board of directors and staff 2019–2020 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com maria maestro lopez, md, phd nidcap trainer hospital universitario 12 de octubre nidcap training center email: mariamaestro@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, md nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu issn: 2689-2650 (online) all published items have a unique document identifier (doi) developmental observer • 2020 • 27 nidcap on the web the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap training centers – facebook pages many of the training centers and nidcap groups have established their own facebook pages. these pages provide useful resources for members and by joining the groups and sharing the pages you are helping to spread information about nidcap. here are a few to get you started. if you know of others please send an email to developmentalobserver@nidcap.org for inclusion in the next issue. follow us on all of our social media platforms: like us on facebook follow our posts on pinterest watch our videos on you tube connect with colleagues on linkedin read and participate on our nidcap blog follow us on twitter http://nidcap.org/blog/ sandra.kosta@nidcap.org developmentalobserver@nidcap.org https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.facebook.com/nidcap/ https://www.linkedin.com/company/nidcap-federation-international https://www.facebook.com/nidcap https://www.pinterest.com/nidcap/ https://www.youtube.com/user/nidcapfi https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international http://nidcap.org/blog/ http://nidcap.org/blog/ https://twitter.com/nidcap https://www.facebook.com/nidcap-france-224651964347914/ https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829 https://www.facebook.com/nidcap/ https://www.facebook.com/sophia-nidcap-training-centrum-294132274031829 https://www.facebook.com/nidcapaustralia/ https://www.facebook.com/nidcapkarolinska https://www.facebook.com/nidcapporto.s.joao www.nidcap.org nidcap training centers become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james helm, phd email: jimhelm27@gmail.com nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, rn, mn contact: nadine griffiths aust nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be denmark danish nidcap training and research center aarhus university hospital, aarhus n, denmark director and contact: hanne aagaard, rn, mscn, phd co-director: eva jörgensen, rn email: aagaard@clin.au.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.broghammer@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: liv ellen helseth, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente email: saojoaonidcap@chsj.min-saude.pt spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, msc, obe email: gillian.kennedy4@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il http://nidcap.org/en/about-us/membership-overview/ 18 • 2023 • developmental observer akça k, kurudirek f. development of the individualised developmental care knowledge and attitude scale. appl nurs res. 2023 aug;72:151697. doi: 10.1016/j. apnr.2023.151697. epub 2023 jun 17. pmid: 37423682. al-matary a, al-matary m, delacena s, aljohani e. perception of parents in experiencing kangaroo care in saudi arabia. journal of neonatal nursing, 2023, 29(4):652-656. doi: 10.1016/j. jnn.2022.11.019. babaie m, nourian m, atashzadeh-shoorideh f, manoochehri h, nasiri m. patient safety culture in neonatal intensive care units: a qualitative content analysis. front public health. 2023 jan 20;11:1065522. doi: 10.3389/ fpubh.2023.1065522. pmid: 36741949; pmcid: pmc9895384. free pmc article bertoncelli n, lugli l, bedetti l, lucaccioni l, bianchini a, et al. parents’ experience in an italian nicu implementing nidcap-based care: a qualitative study. children (basel). 2022 dec 7;9(12):1917. doi: 10.3390/children9121917. pmid: 36553360; pmcid: pmc9776912. free pmc article da silva medeiros n, teixeira c, silva m, de oliveira l, do amaral rocha j, contim d. developmental care for preterm newborns: scoping review. [cuidado desenvolvimental para recém-nascidos pré-termos: revisão de escopo] revista de enfermagem do centro-oeste mineiro. 2023, 13. doi: 10.19175/recom. v13i0.4763. discenza d. nicu parents desperately need a “heather” after discharge day. neonatal netw. 2023 mar 1;42(2):99102. doi: 10.1891/nn.2022-0042. pmid: 36868803. elghany-abd el-fatah a, mahmoud a. effect of simulative heartbeat nest on improving physiological parameters, comfort and pain of preterm neonates at neonatal intensive care unit. journal of nursing science benha university. 2023, 4(1):1244-1261. doi:10.21608/jnsbu.2023.292105. erdoğan ç, turan t. evaluation of the effectiveness of digital game-based learning given to nursing students for the developmental care of infants in neonatal intensive care unit. comput inform nurs. 2023 may 1;41(5):300-308. doi: 10.1097/cin.0000000000000920. pmid: 37145853. fraser a, griffiths n, webb a. why reading matters. the development of a read-a-thon for neonatal intensive care units to encourage neonatal exposure to language. journal of neonatal nursing.2023, issn 1355-1841. https://doi. org/10.1016/j.jnn.2023.02.003. fujimoto t;藤本智久; get to know nidcap professionals [nidcap プロフェ ッショナルを知る] 小児看護= the japanese journal of child nursing, 2023; 46(1):69-62. fuller k, dewolfe t, coughlin m. the developmental participation skills assessment: development and content validation. neonatal netw. 2023 mar 1;42(2):72-80. doi: 10.1891/nn.20220029. pmid: 36868808. ghorbani f. open visitation in the nicu: nurses’ perspectives on barriers and facilitators. frontiers of nursing. 2023; 10(2):183-191. doi: https://doi. org/10.2478/fon-2023-0019 gibbs d, warren im. implementing infant and family-centred developmental care: exploring the impact of an innovative educational initiative. acta paediatr. 2023 feb;112(2):264-272. doi: 10.1111/ apa.16603. epub 2022 nov 30. pmid: 36415078. giordano v, fuiko r, witting a, unterasinger l, steinbauer p et al.. the impact of pandemic restrictive visiting policies on infant wellbeing in a nicu. pediatr res. 2023 sep;94(3):1098-1103. doi: 10.1038/s41390-023-02562-w. epub 2023 mar 23. pmid: 36959317; pmcid: pmc10034238. free pmc article gomes s, christoffel m, gomes a, rodrigues e, diniz m, et al. tradução e adaptação para o português da preterm infant breastfeeding behaviour scale. acta paulista de enfermagem. 2023, 36. https://doi.org/10.37689/acta-ape/2023ao001711. graf j, wetzel n, abele h, plappert c. bonding: promoting parent-child bonding in preterm infants nidcap as an interdisciplinary challenge. [bonding: förderung der eltern-kind-bindung bei frühgeborenen–nidcap als interdisziplinäre herausforderung] hebamme, 2023; 36 (1):56-62. doi: 10.1055/a-1990-6172. jyoti j, spence k, laing s, griffiths n, popat h. parents’ awareness and use of nonpharmacological methods to manage their baby’s procedural pain in a surgical neonatal intensive care unit. journal of neonatal nursing. 2023; 29 (1): 60-67. https://doi.org/10.1016/j. jnn.2022.02.005. kim js, kim hr. perception and educational needs of developmentally supportive care at-home for parents of pre-term newborns. healthcare (basel). 2023 jun 9;11(12):1700. doi: 10.3390/ healthcare11121700. pmid: 37372818; pmcid: pmc10298373. free pmc article selected publications 2023 kaye spence and maria maestro lopez. editorial team. doi: 10.14434/dov16i3.35671 the following is a selection of the 90 publications yielded from a search of pub med and google scholar using the keyword – nidcap in all languages. http://dx.doi.org/10.1016/j.jnn.2022.11.019 http://dx.doi.org/10.1016/j.jnn.2022.11.019 http://doi.org/10.19175/recom.v13i0.4763 http://doi.org/10.19175/recom.v13i0.4763 https://doi.org/10.21608/jnsbu.2023.292105 https://doi.org/10.21608/jnsbu.2023.292105 https://doi.org/10.2478/fon-2023-0019 https://doi.org/10.2478/fon-2023-0019 https://doi.org/10.37689/acta-ape/2023ao001711 https://doi.org/10.37689/acta-ape/2023ao001711 https://doi.org/10.1016/j.jnn.2022.02.005 https://doi.org/10.1016/j.jnn.2022.02.005 2023 • developmental observer • 19 landry ma, kumaran k, tyebkhan jm, levesque v, spinella m. mindful kangaroo care: mindfulness intervention for mothers during skin-to-skin care: a randomized control pilot study. bmc pregnancy childbirth. 2022 jan 15;22(1):35. doi: 10.1186/s12884-02104336-w. pmid: 35033000; pmcid: pmc8761274. free pmc article lee hn, park jh, cho h. developmentally supportive care among neonatal intensive care unit nurses in south korea: knowledge, perceived importance, perception, and perceived competence. adv neonatal care. 2023 jun 1;23(3):e60-e69. doi:10.1097/ anc.0000000000000943. epub 2021 oct 1. pmid: 34596087. liebowitz m, kramer kp, rogers ee. all care is brain care: neuro-focused quality improvement in the neonatal intensive care unit. clin perinatol. 2023 jun;50(2):399-420. doi: 10.1016/j. clp.2023.01.004. epub 2023 mar 9. pmid: 37201988. lisanti aj, vittner dj, peterson j, van bergen ah, miller ta, et al. developmental care pathway for hospitalised infants with chd: on behalf of the cardiac newborn neuroprotective network, a special interest group of the cardiac neurodevelopmental outcome collaborative. cardiol young. 2023 mar 30:1-18. doi: 10.1017/s1047951123000525. epub ahead of print. pmid: 36994672. lode-kolz k, hermansson c, linnér a, klemming s, hetland hb, et al. immediate skin-to-skin contact after birth ensures stable thermoregulation in very preterm infants in high-resource settings. acta paediatr. 2023 may;112(5):934-941. doi: 10.1111/ apa.16590. epub 2022 nov 18. pmid: 36333892. mann p, schmied v, psaila k, foster j. integrative review of cobedding of infant twins. j obstet gynecol neonatal nurs. 2023 mar;52(2):128-138. doi: 10.1016/j.jogn.2022.12.004. epub 2023 jan 23. pmid: 36702163. martínez-shaw ml, sánchez-sandoval y. effective stress intervention programs for parents of premature children: a systematic review. stress health. 2023 apr;39(2):236-254. doi: 10.1002/smi.3194. epub 2022 sep 3. pmid: 36029285. mason l, marufu tc,  warren i, et al.  interventions for supporting parents of infants requiring neonatal inter-hospital transport: a systematic review. nurs crit care.  2023; 1-14. doi:10.1111/nicc.12922 matsumoto n. 松本直美; activities of nidcap professionals [nidcap プロ フェッショナルの活動] 小児看護 = the japanese journal of child nursing, 2023; 46(1):94-99. mcnamara l, morgan c, novak i. interventions for motor disorders in high-risk neonates. clin perinatol. 2023 mar;50(1):121-155. doi: 10.1016/j. clp.2022.11.002. pmid: 36868702. montjaux-régis n, kuhn p, boimond n, moreau-gaudry i, gatbois e, et ai. hospitalisation à domicile pour les nouveau-nés. journal de pédiatrie et de puériculture. 2023; 36 (4): 133-140. doi: 10.1016/j.jpp.2023.05.002 moss e, kim k, dickinson k, gettis m. developmental care rounds: an initiative to improve nursing confidence and contributions at the bedside. neonatal netw. 2023 jan 1;42(1):37-44. doi: 10.1891/nn2022-0022. pmid: 36631259. muirhead r, bates a. does the implementation of multidisciplinary developmental care rounds increase the utilization of developmental caregiving interventions in the neonatal unit? j perinat neonatal nurs. 2023 apr-jun 01;37(2):153-163. doi: 10.1097/jpn.0000000000000725. pmid: 37102563. neves a, vilan a, soares h, almeida s, guimarães h. neurodevelopmental outcomes of premature infants born at ≤ 32 weeks of gestational age with post-hemorrhagic hydrocephalus treated with ventriculoperitoneal shunt. journal of pediatric and neonatal individualized medicine. 2023; 12(1): e120114-e120114. doi: 10.7363/120114. ochandorena-acha m, terradas-monllor m, lópez sala l, cazorla sánchez me, fornaguera marti m, et al. early physiotherapy intervention program for preterm infants and parents: a randomized, single-blind clinical trial. children (basel). 2022 jun 15;9(6):895. doi: 10.3390/children9060895. pmid: 35740832; pmcid: pmc9222162. oxenbøll collet m, albertsen h, egerod i. patient and family engagement in danish intensive care units: a national survey. nurs crit care. 2023 jul 4. doi: 10.1111/nicc.12947. epub ahead of print. pmid: 37402590. petersson må, benzein e, massoudi p, wåhlin i, persson c. parents’ experienc es of the significance of interpersonal interactions for becoming parents and a family during neonatal intensive care. j pediatr nurs. 2023 mar-apr;69:e1-e6. doi: 10.1016/j.pedn.2022.11.021. epub 2022 dec 5. pmid: 36481222. free pmc article poets cf, quante m. rethinking the pathophysiology of cardiorespiratory events in infants born preterm. j pediatr. 2023 jul 30:113651. doi: 10.1016/j. jpeds.2023.113651. epub ahead of print. pmid: 37527701. purwandari h, purnamasari md, mulyono wa, huang mc. preterm infant cues during breastfeeding and its measurement: a scoping review. belitung nurs j. 2023 jun 26;9(3):209-217. doi: 10.33546/ bnj.2445. pmid: 37492760; pmcid: pmc10363972. pysariev a, marushko y. practical aspects of teaching of neonatology to students of the medical and psychological faculty [ практичні аспекти викладання неонатології студентам медикопсихологічного факультету] modern pediatrics. ukraine. 2023; 2(130):121126. doi: 10.15574/sp.2023.130.121. ravarian a, rahmani n, soleimani f, sajedi f, noroozi m, et al. test of infant motor performance: cross-cultural adaptation, validity and reliability in persian infants. early hum dev. 2023 jul 22;184:105831. doi: 10.1016/j.earlhumdev.2023.105831. epub ahead of print. pmid: 37536018. https://doi.org/10.1111/nicc.12922 https://doi.org/10.1016/j.jpp.2023.05.002 https://doi.org/10.7363/120114 https://doi.org/10.15574/sp.2023.130.121 20 • 2023 • developmental observer robinette b, palokas m. promoting sleep and rest of infants using nonpharmacological interventions within the neonatal intensive care unit at children’s of mississippi. jbi evid implement. 2023 mar 1;21(1):78-86. doi: 10.1097/ xeb.0000000000000343. pmid: 36383919. séassau a, munos p, gire c, tosello b, carchon i. neonatal care unit interventions on preterm development. children (basel). 2023 jun 2;10(6):999. doi: 10.3390/children10060999. pmid: 37371231; pmcid: pmc10297482. free pmc article sizun j, kuhn p, tscherning c. care with child development and andré bullinger’s special look at prematurity. rev paul pediatr. 2023 may 15;41:e2022208. doi: 10.1590/1984-0462/2023/41/2022208. pmid: 37194842; pmcid: pmc10184996. free pmc article piris-borregas s, bellón-vaquerizo b, muñoz-lópez o, cuadrado-obregón n, melchor-muñoz p, et al. parents who spent more hours in intensive care units with their low birthweight newborn infant did not achieve autonomous care faster. acta paediatr. 2023 jun 18. doi: 10.1111/apa.16878. epub ahead of print. pmid: 37332100. thébaud v, dargentas m, sizun j. perceptions and expectations of parents regarding their position in a french nicu: quantitative and qualitative approaches. bmj open. 2022 jul 8;12(7):e052044. doi: 10.1136/bmjopen-2021-052044. pmid: 35803617; pmcid: pmc9272115. free pmc article vederhus bj, olsen ms, eide ge, storm h, guthe hj. alps-neo pain and stress assessment scale for neonates-a measure for procedural pain. acta paediatr. 2023 jun;112(6):1220-1225. doi: 10.1111/ apa.16759. epub 2023 mar 28. pmid: 36938888. wolfe kr, caprarola sd, clark c, davidson j, everitt md, et al. implementation of the cardiac inpatient neurodevelopmental care optimization (cinco) programme: an interdisciplinary, generalisable approach to inpatient neurodevelopmental care. cardiol young. 2023 apr 12:1-8. doi: 10.1017/ s1047951123000562. epub ahead of print. pmid: 37042605. vittner d, buehler d. gravens by design: nidcap nursery program: implementation of the nidcap model of care. neonatology today. 2023, august, 18 (8):71-75 a father's love nidcap care in the moment im ag e us ed w ith p er m iss io n 2020 vol. 13 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “rejoice with your family in the beautiful land of life.” albert einstein table of contents the strength of nfi's collective experience ................................................ 1 editorial ...................................................... 2 putting beauty at the heart of the healing process ....................................... 3 family voices ............................................. 5 reflections on infant feeding ................. 8 global perspective of developmental care – cyprus ......................................... 10 my nidcap journey as an interpreter ............................................... 12 nidcap training centers around the world ........................................................ 16 the science desk .................................... 18 publications ............................................. 21 poet's corner ........................................... 25 nidcap on the web ................................ 27 issn: 2689-2650 (online) do 13:2 full issue doi: 10.14434/do.v13i2.31223 u se d w ith p er m is si on the strength of the nfi’s collective experience deborah buehler, phd president, nidcap federation international doi: 10.14434/do.v13i2.31301 one of my very early experiences as a nidcap trainer took me to falun, sweden. while i was there, i shared nidcap’s introductory lecture and guided a few introductory bedside observations. with that visit, the healthcare team learned about nidcap and a new group of nidcap trainees was launched. what i remember most about that trip was how much i learned. my understandings of what was and what could be possible within hospital care was completely expanded by the people i met and the care i observed. during one particular nidcap observation, i vividly remember a mother and her baby and the nurse caring for them. they were so beautifully attuned with one another that i was mesmerized. over the several days i visited the nursery, i learned that aspects of medical and nursing care could be done in different ways than i had seen practiced in u.s. hospitals. during the breaks of my lecture, i remember a physical therapist leading the whole audience, of physicians, nurses and therapists, through joyful stretching breaks with children’s songs, which included the itsy-bitsy spider. it was evident these small, yet powerful moments of silliness were remarkable for the respect and cohesiveness of the whole healthcare team. i especially remember this nidcap training session, nearly 30 years ago, in part, because it was my first solo international trip which posed challenges on many levels for me. perhaps being stretched in new ways created opportunities to be open to seeing and being shaped by my experiences. this moment in time captured my imagination and continues to inform my nidcap training and mentoring of trainees and health care professionals and their resolve to evolve their care to be ever more supportive. deborah buehler, phd continued on page 2 collaboration and support for and from each infant's family is the core of nidcap. nidcap care in the moment family strength 2 • 2020 • developmental observer 2020 is continually described as unprecedented (our world has never faced this scale of international pandemic before) and as creating a new normal (life is very quickly changing as we adapt around the world). everything appears to be affected. this most certainly includes access to and the experience of hospitalizations and healthcare. within newborn and infant intensive and special care nurseries, parents are being separated from their newborns and young infants because of hospital infection precautions. healthcare professionals are tasked with providing medical care in the face of tremendous barriers, workloads and sacrifices. how do healthcare professionals, and the families they serve, understand and navigate all of this extraordinary adversity? one key to these understandings may be hearing and reflecting on the stories, the struggles and the triumphs, of everyone who is part of these systems of care. brené brown, phd, lmsw, a research professor, wrote “maybe stories are just data with a soul.” families’ and professionals’ lived experiences, including ones of pain and suffering, may provide insight, inspiration and direction for healthcare’s next steps. much has been written on how hardship impacts individuals. for instance, kaufman and gregoire (2015) stated that “experiences of extreme adversity show us our own strength.” (p.146) beyond survival, these authors optimistically described how individuals may also thrive with adversity. this capacity for resilience is a profound strength that offers stability and growth for individuals as well as for healthcare systems. this unprecedented year is also creating challenges and a new normal for the nfi and nidcap efforts. nidcap training centers and their trainers are faced with how to educate and guide trainees and hospitals with in-person and travel restrictions. this comes at a time when individual and system-wide support is needed more than ever. how will the nfi navigate the short and long-term challenges ahead? to thrive as an organization in this rapidly changing world, the nfi must respond to the incredible realities faced by nidcap trainers around the world. examining difficulties, strengths and opportunities are crucial at this time. drawing on the remarkable skill, passion and experience within our community, we must listen, question, discuss, reflect, learn and create with one another. innovations for training, education and support may emerge as the nfi’s members, its nidcap trainers and supporters, continue to share their own experiences and perspectives with one another. our global nfi community offers tremendous strength and wisdom to draw upon for stability and direction. support for and from one another may lead to inspiration of creative possibilities to build future directions. the nfi, and its members, have a tremendous opportunity to rise up to meet this extremely difficult moment in time. how 2020 captures our collective hearts and imaginations and informs our next steps will ensure that the nfi and nidcap’s capacities and reach thrive for years to come for newborns and infants and their families. reference: kaufman, s. b. & gregoire, c. (2015). wired to create: unraveling the mysteries of the creative mind. new york, ny: perigee books. welcome to the second issue for 2020. what a year it has been so far. there have been many challenges for the nidcap community. resilience is a prime focus at the moment. this issue has a theme of reflection from our global community. there are a variety of interesting perspectives. michiko doi reflects on her journey as a nidcap translator in japan, giving us a unique glimpse into her world. bronagh mcalinden from australia reflects on her observations of two newborn feeding episodes showing the importance of close observation. ita litmanovitz joins us from the science desk reflecting on the effects of covid-19 through her examination of stress on the developing brain, and in our new poet’s corner, julia giesen, nidcap professional, reflects on her nidcap training through her poetry. in our family voices column we hear a father's journey through the nicu with his twin daughters. these manuscripts show the power of reflection, not only as a learning strategy but as a way of enriching the experience of the journey. we journey to barcelona, spain to hear about the work of the nidcap training centers and we travel to cyprus in the mediterranean to learn about developmental care initiatives. the rimini team share their beautiful story of their using beauty to minimise stress in the nicu. deborah buehler, president of nfi shares her essay on what she sees as the strength of the nfi collective during these challenging times. the global spread of nidcap is evident with contributions from japan, australia, canada, israel, italy, spain, cyprus and usa. we are certainly a global community. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia doi: 10.14434/dov13i2.31064 kaye spence, am greetings from the editor developmental observer • 2020 • 3 putting beauty at the heart of the healing process gina ancora1, sandra lazzari2, natascia simeone3 1head nicu, 2 chief nurse, 3nidcap professional newborn intensive care unit, infermi hospital, rimini, italy newborn babies in the newborn intensive care unit (nicu) often face physical, emotional and psychological distress. the parents also may experience emotional, psychological and spiritual suffering during this period, affecting their baby's development negatively. therefore, the baby's development in nicu may be disadvantaged in three ways: their prematurity and the illnesses associated with it, the distress they experienced in the nicu, and the suffering of their parents. there are two main causes of this distress. first, the use of high technology in the nicu can overwhelm and agitate small and fragile newborns and their parents. second, hospitals with closed institution philosophies can perpetuate an unsupportive environment for parents. they may be denied ongoing opportunities to be with their newborn(s), as if they were visitors, hindering their emerging parenting skills and identity. this distress may be quite widespread. how can healthcare systems and professionals address and reduce all this sufferance? solutions may lie in reimagining how to educate the nicu staff. specifically, education and support with a focus on the family and their development as well as on the design of the hospital space to be relaxing and individualized. each family in the nicu experiences their own unique journey. humanity and beauty can be found in the stress and grief that many of them face. grief can often create opportunities and space for sharing, healing and support. creating welcoming nicu environments offers opportunities for families to be at the center of the healing process, where they may feel supported and not so alone. caring for the beauty of the nicu space offers an aesthetic element. it helps to communicate the importance of each person, by caring about them through the natural aspiration to beauty, especially their relationships with a new life. this attention helps to heal parental feelings of helplessness, fragility, resignation and fears of being unable to cope. the humanizing initiative of putting beauty at the heart of the healing process follows an ongoing cultural change in attitude. each individual is cared for as a whole, including their family, while still considering their delicate stage of development. dostoevsky1 said “beauty will save the world”, and in our case it will help to reduce the stress of the nicu environment for newborn infants and their families. it will produce long term benefits for the neurological, emotional, academic and psychological development of the child. important ways to create beauty within nicus are to design clinical areas to be welcoming with comfortable furniture (both for the baby and their parents), offer pleasant views with natural imagery, use soft and indirect lighting, and maintain low noise levels. implementing these changes in the care environment has proved to be effective, for example, in reducing the level of pain and the use of painkillers in adults. in 1948, the world health organization (who) was already defining wellbeing beyond merely the absence of physical illness, but also in terms of quality of life. this approach in the hospital is complex and requires many skills: clinical, artistic and a semi-annual publication of the nidcap federation international ©2020. the statements and opinions contained in this newsletter are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. senior editor kaye spence am associate editors diane ballweg, aprn, ccns, deborah buehler, phd, sandra kosta, ba gretchen lawhon, phd, rn, faan, maria lopez maestro, md associate editor jeffrey r. alberts, phd for science column editor debra paul otr/l contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer doi: 10.14434/do.v13i2.31058 a backlit artistic panel in the nicu in rimini created with support from the charity la prima coccola onlus. 4 • 2020 • developmental observer in order to create a more welcoming environment, la prima coccola onlus works to fill the new rimini nicu with pictorial spaces and backlit artistic panels throughout the clinical areas occupied by the babies and their parents. technical. the goal of the families that volunteer at “la prima coccola onlus”, a charity founded to support the nicu in rimini with the cooperation of hospital staff, is to draw on the who’s vision. they work to fill the new nicu with pictorial spaces and backlit artistic panels throughout the clinical areas occupied by the babies and their parents. furthermore, work environments that include beauty as a requirement, contribute to the wellbeing of the staff. being surrounded by beauty encourages an open attitude of listening and increased empathy with the babies and their families, producing positive outcomes and more efficient care. reference: 1. fyodor dostoyevsky, the idiot. developmental observer • 2020 • 5 fa m i ly v o i c e s column editor: debra paul, otr/l doi:10.14434/do.v13i2.31065 our story began early on the morning of july 18th, 2019 when i was awoken by a startling scream. my wife nikki had woken up in the middle of the night to discover she was bleeding, a lot. nikki was just four days into her 27th week of pregnancy with our twin girls. in a haze of sheer panic, nikki waited in the car crying as we called our next-door neighbor to stay with ben and lily (our older set of twins) until nikki’s dad could drive from his home two hours away to stay with them. with our eldest in our neighbor’s care, we rushed to abington hospital – jefferson health in abington, pennsylvania. nikki was immediately placed in the triage portion of the maternity ward. we felt as if our worst nightmare was coming true again, as another frantic visit 11 months ago ended in the tragic loss of our daughter sophie at term when it was discovered that there were knots in her umbilical cord that had suddenly tightened. thankfully, after what seemed like an eternity, the medical team were able to find heartbeats for both babies, and so far, they were doing fine. the focus now turned to nikki to try and ascertain the reason for the sudden heavy bleeding. in past ultrasounds, it was identified that nikki had a very marginal placenta previa. although the doctors had originally told us this would likely rectify itself in the next few weeks as the babies grew, without another known cause, they believed this was the likely reason. while the doctor prepared us for an emergency caesarian to deliver the girls, time passed, and after an hour or so the bleeding slowed down and panic was averted for the interim. after a few hours in triage, nikki was transferred to the maternity ward for additional monitoring where the conversation turned from an emergency delivery to the possibility of moving nikki to a “mom unit” for the remainder of her pregnancy. that evening i drove the 10 minutes back to our house to check on the kids (and nikki’s dad). after speaking with nikki and preparing for my return to the hospital early the next morning, i received a frantic call from nikki telling me she started bleeding again and that i needed to get to the hospital as soon as possible for delivery of our girls. as i walked into the maternity ward, i saw the obstetrician (ob/gyn) outside nikki’s room; she was the same ob/gyn that delivered our eldest twins, and i took much comfort in that as we both knew her very well. nikki’s doctor told me outside her room that we had to move ahead and deliver the babies for nikki’s safety given the volume of blood she was losing. i recall tearing up and thinking to myself that i couldn’t let nikki see me crying as i had to be strong for her since i knew she was very scared. after taking a minute to compose myself, i walked into her room, held her hand, and the adventure began. we were whisked off to an operating room and before i knew it, lucile ‘lucy’ sophie and matylda ‘maty’ maura had entered the world topping the scales at a whopping 2 pounds, 6 ounces (1179 grams) and 2 pounds, 3 ounces (1043 grams). each baby had their own team working with them and i got a brief second to see each baby (and cut lucy’s umbilical cord!) before they disappeared to the nicu. i was genuinely surprised by how big they looked, or maybe long is a better description given how skinny they both appeared. in my head a 27 weeker was going to be tiny, and in the grand scheme of things they certainly were, but it was a small comfort to see that they resembled a fullterm baby much more than i expected. after staying with nikki as she moved through recovery and was transferred to her hospital room, i set off to the nicu to get an in-person update on lucy and maty. the nicu was already familiar to us, as our other set of twins, ben and lily were born a father’s journey by kevin o’regan proud dad with maty and lucy at 33 weeks pma. 6 • 2020 • developmental observer at 35 weeks, 6 days in the same hospital where they spent 5 days in the nicu. their time in the nicu, however, was not due to prematurity. ben had a broken humerus from a traumatic delivery, and lily had low glucose levels. thinking back on our first experience with the nicu as worried first-time parents, those 5 short days felt like a lifetime. little did we know the months of nicu life that were to come. when i arrived maty and lucy were in their incubators surrounded by medical equipment with all kinds of tubes and wires connected to them. they were stable, and according to their nurses, doing as well as could be expected. the array of equipment and sounding alarms everywhere was overwhelming as a parent you want to protect your children from harm, and that day, i felt absolutely helpless. for the first few days we could only touch them through the walls of the incubator, holding their tiny hands as their little chests rose and fell with each cpap assisted breath. finally, after two days, they were stable enough to be held. i still remember the image of nikki holding them for the first time. after a troubling year for our family, she had never looked so happy. at first our time in the nicu moved slowly with what seemed like little progress from day to day. in my limited experience of illness or hospitalizations, there are usually typically signs of change that either signal improvement or regression. in my nicu naivety, i was expecting a similar sign with the girls in those first few days or at least some indication that they were going to be ok. obviously, no one can predict the future, but i longed for a crystal ball for a peek of what was to come, some indication that the long road ahead was going to ultimately end with all of us going home together, happy and healthy. both my wife and i have an extensive science background, so we questioned everything, wanting to understand the how and the why behind each and every decision and change in their care. we always made sure to be present for daily rounds so we could be part of the conversation and advocate for the girls. personally, i became focused on the numbers on the monitors. their heart rate, respiration rate, oxygen saturation those were the numbers i lived by for three months. initially every alarm was terrifying, who wasn’t breathing, what were their vital signs?... was their oxygen saturation level dipping?... was i holding the girls incorrectly? over time i came to understand that each alarm wasn’t a cause for panic, just a signal to assess the situation and address any issues accordingly. being a small part of maty and lucy’s daily care made a huge difference. i looked forward to just doing things like changing a diaper or taking their temperature; these small things in the crazy situation made me feel more like a normal parent in a far from normal situation. the highlight of course was holding them, feeling them breathe against your chest they felt so small, so fragile, yet so incredibly strong and resilient. of course, the nicu experience is full of ups and downs. you hope for consistent steady progress, reduced breathing support, gradual weight gain and positive test results. each battle that the girls won came with new challenges for them navigate; it truly is a rollercoaster. it was important to try and stay positive, but at the same time to temper your optimism and try to maintain an even keel so you could enjoy the progress without getting too down about the setbacks. bringing the girls home. developmental observer • 2020 • 7 our nicu had a tradition of printing out signs to celebrate various milestones – a pound gained, a bottle finished, and so on. as a parent, as simple as it seems, you wanted to see those signs next to your child’s incubator so badly. given the layout of the nicu, we could see other babies ahead of ours in their journey. although the plethora of signs at their stations were always a source of jealousy, they also gave us hope that our girls would someday soon reach these seemingly small but important milestones. slowly we began to chat with some of the other nicu parents. the more familiar a face, the less awkward we felt saying hi or chatting to them briefly without disturbing their privacy. those conversations helped. it’s a unique experience and chatting to someone going through the same gamut of emotions was a welcome distraction. in the initial weeks of our journey nikki spent the day with the girls and i would go in for a few hours each evening after work to sit with them and hold them. leaving them at the end of each visit was always difficult, hoping for an uneventful, alarm-free evening; yet our girls were never alone, and in many ways, neither were we. the entire nicu staff including the receptionists, the respiratory therapists, the doctors, and most importantly, the nurses who doted on them every day all became part of our family. loving our children with us and for us, sending us pictures and updates in the middle of the night, talking to us about nothing and everything. they were fantastic and will hold a special place in our hearts forever. as the girls progressed, we were able to play a bigger and bigger role in their care, feeding them bottles, changing their clothes, and my personal favorite – bath night. despite the obvious physical improvements that the girls were making (weight gain, transitioning to a bottle, and breathing without assistance), our minds always turned to their development. fortunately, our nicu had a developmental specialist on staff. she had spent some time with the girls throughout their stay, initially monitoring how they reacted to their care and feedings, but it was when she administered the assessment of preterm infants' behavior (apib) test that i was really intrigued. the idea of the test initially seemed a little bizarre as i couldn’t see how a preterm baby could possibly do any of the things being assessed. yet, to my genuine surprise, each test elicited the predicted response, and it was immensely comforting to see that the girls were behaving as they should from a developmental standpoint. after 75 days, the girls were finally given the green light to go home. looking back on our experience in the nicu, we were incredibly fortunate for a relatively smooth journey and will always be indebted to the wonderful, caring staff we met and befriended. with their help, our girls have already overcome the greatest challenge of their lives and are now thriving one-year olds. each day brings to light new facets of their personalities, and i can’t wait to see who they become in the years ahead. kevin and nikki live with their family and a very lazy basset hound in hatboro, pennsylvania. maty and lucy – one-year birthday (9 months adjusted). 8 • 2020 • developmental observer reflections on infant feeding bronagh mcalinden (mphil, bpthy (hons)) physiotherapy department, mater mother’s hospital, south brisbane, queensland, australia in may 2020, i graduated from the family and infant neurodevelopmental education – level 2 (fine 2) course. in australia, the fine program is a precursor to nidcap training. this course enabled me to improve my knowledge and practical experience when working with preterm and critically ill newborns. i found fine 2 challenged me, both as an observer and in a hands-on role, to look for and respond to the cues expressed by preterm babies. i learned to provide more individualized care to babies based on my observations of their cues and improved my ability to educate my colleagues and the families. as a physiotherapist my experience undertaking the infant feeding module was particularly valuable. feeding is not typically part of my role, so through fine 2 i was able to observe babies feeding. i learned a lot about how challenging feeding can be for preterm infants. i would like to share my experience with infant feeding in the following observation and reflections. reflections of a tube feeding i observed mia for a tube feeding as part of my fine 2 program. mia, daughter of katherine, was born at 25+4 weeks gestation and was 36+4 weeks corrected age when i observed her. mia weighed 480 grams at birth and weighed 1758 grams at 36 weeks corrected age. i observed mia in the afternoon. at the time of her feeding mia was not rousing enough to try an oral feeding. as a result, mia had a gravity tube feeding. reflecting on mia’s feeding, i felt quite comfortable watching her and this was no doubt reflected by her stable state and minimal signs of distress. in thinking about how this feeding could have been improved, prone positioning appeared as a strength for mia in helping her settle, digest and maintain a flexed position with her hand up so she could self-soothe. obviously being in this position (or full prone) on her mother, katherine’s, chest would have been preferable and i felt this was something that could be encouraged with katherine when she was present. the use of a pacifier could be something to consider, however i appreciate that mia was largely in a sleep state. however, the way her nurse prepared her position and immediate environment within her cot, really assisted mia to maintain a relaxed state and tolerate her feeding well. i also reflected on how i contributed to the noise around mia when i was conversing with her nurse. this was something i wish i hadn’t done, and highlighted to me how easy it is to become a bit complacent in these situations. i have found since beginning this course that i am much more aware of my speaking volume and those of my colleagues. i also try and move conversations away from the baby and demonstrate hushed talking. reflection of an oral feeding i observed a second baby, max, during an oral feeding to contrast difference in responses and behaviours between tube and oral feeding. max was born at 23+0 gestation and was 41+0 at the time of my observation. he was being nursed in the special care nursery in an open cot and still requiring high flow nasal pressure (hfnp) at 5l/min in 0.25 fio2 at baseline. max’s feeding regime at the time was demand feeding (roughly four hourly). i observed max for a bottle feed. reflecting on max’s feeding, i felt it could have gone smoother and reminded me how complex feeding is and how challenging it can be for a baby with existing vulnerabilities. i felt that in terms of preparation, although max was demand feeding, the timing of the feeding delivered was probably slightly overdue. max was clearly hungry and some of the energy and stress he spent prior to feeding may have been better utilized during his feeding, had it been given slightly earlier. the environment for max’s feeding, like mia’s, was busy. a quieter setting, with lightening reduced, may have also helped minimize max’s energy expenditure and stress prior to, and during his feed. i found that max tended to pace himself, something he clearly needed to do to satisfy both his feeding and breathing requirements. this was interesting to see, but also made me realise how much energy goes into feeding for a baby with chronic neonatal lung disease (cnld), such as max, and also how challenging it can be to feed to a baby like max. i did feel some concern regarding how his mother would cope with feeding, considering doi: 10.14434/do.v13i2.31059 tube feeding a newborn infant. u se d w ith p er m is si on developmental observer • 2020 • 9 how little opportunity she had had to feed max. it definitely highlighted the need to ensure that parents feel well-supported and comfortable with feeding, prior to taking babies home. i found this course module to be one of the more challenging for me. i took the opportunity to get a deeper understanding to observe how max handled his feeding. as with previous modules, a nice opportunity for contrast came out of my two observations, not only the way in which mia and max differed in their type of feeding, but also in how well each coped. mia obviously had less of a challenge (and challenging time) with her tube feeding, compared to max who had to work very hard to simply breathe and suck effectively. both max and mia had significant challenges related to their prematurity and extremely low birth weight and unfortunately both babies were in a situation where access to their mother was limited. i took from the comparison the importance of getting mia’s mother involved in her oral feeding as soon as mia was ready, to avoid the same difficulties that max’s mother was likely to have at the time of her discharge. i think from now on i will include feeding more readily into my education with parents from an early stage. by using some of the observations and reflections i have made in this module, i may be able to help parents become aware of signs of feeding readiness and intolerance. hopefully this will give my sessions a more well-rounded approach in the future. although i found it less comfortable than other modules i’m glad i had taken the opportunity to observe feeding. a feeding (tube or bottle/ breast) is usually what comes after i see the baby in my role as a physiotherapist. i am very rarely present for the duration of a feeding, having moved on to other tasks and seeing other babies. seeing how max and mia responded to feeding, a basic survival and key developmental skill, was really interesting and gave me a much better understanding of how challenging this can be for both parent and baby. this course definitely helped me gain better insight into the challenges and how a baby’s stability and robustness during feeding can indicate a lot about how mature they are, thus adding another layer to my understanding of the impact of feeding on overall development and vice versa. mother bottle feeding her newborn. mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 u se d w ith p er m is si on 10 • 2020 • developmental observer cyprus is a small island situated in the south eastern mediterranean. the republic of cyprus was founded in 1960, after decades of colonial british rule and it joined the european union in 2004 and the eurozone in 2008. since the turkish invasion in 1974 the island has been halfoccupied and the following article refers only to the situation in the area over which the government of the republic of cyprus exercises effective control and where the acquis communautaire of the european union is fully implemented. there are two nicus in this part of cyprus: a level iii nicu, in the archbishop makarios public hospital in the capital nicosia where 800-900 newborns are treated per year, and a level iib, in the general public hospital in limassol that treats around 350 newborns per year. according to the most recent official data, the rate of preterm births in cyprus is 12%, the neonatal mortality rate is 1.9/1000 and the infant mortality rate is 2.1/1000. annual births are between 8,000 and 9,000. due to lack of community support services, babies spend longer in the hospital than they might where there are community nurses. the nicu in nicosia was founded in 1984, by dr andreas hadjidemetriou, the first cypriot neonatologist. with dedication and maximum personal effort he created the very first nicu in cyprus from scratch. his vision was not only to reduce the mortality of sick and premature infants, but also to ensure the best quality of life for these infants. for this reason, he actively supported the implementation of developmental care and with his zeal and perseverance he inspired his successors to do the same. i had the privilege to work under dr hadjidemetriou’s mentoring during my working term in the archbishop makarios hospital (2007-2013), when we laid the foundation for developmental care. we are still collaborating today, on a voluntary basis, through the parents’ organisation “thermokoititha agapis” (“incubator of love”), despite his retirement and my shift to the private sector. my fulltime collaboration with the nicosia unit, as developmental care leader, began in 2007, since the gradual training of all staff on the implementation of developmental care, became one of dr hadjidemetriou’s priorities. on the occasion of my own training to become nidcap professional (2008-2010) and dr maria zeniou’s nidcap training (2010-2012), the nicosia unit initiated close collaboration with dr inga warren, former director of the uk nidcap centre at st mary’s hospital in london. dr warren has generously been providing consultation to our unit through various baby observation workshops based on the nidcap model, for all the staff. under her valuable guidance in 2009, we managed to create the first protocols of care and in 2010 we began a new institution, the “parents school”, which was about weekly meetings between me and parents, in order to support their communication and interaction with their babies. the “parents school” evolved gradually and in 2013, a psychologist and a nurse were added. in 2010, we were pleased to run the first kangaroo care training for members of the staff with dr nils bergman. since then, we are making consistent efforts to increase the number of babies who enjoy “skin to skin” care. the turning point in developmental care implementation was in 2012 with the foundation course: individualised family centred developmental care run by dr warren, ms bond and myself as an assistant. after that course we decided that it was best to take actions to decentralize developmental care, in order to make more people responsible for preparing strategies, taking actions and initiating staff education. for this reason, we established a central (scientific) multidisciplinary developmental care committee and a sub-committee of 13 nurses that were responsible for spreading knowledge to the rest of the staff. in order to support staff education in using the new protocols of care we named an intensive care room as the “educational nursery room” in which the staff was expected to practice according to the new protocols. the educational nursery room helped everybody to change their mentality in doi: 10.14434/do.v13i2.31061 limmasol team left to right: elena vasiliadou, ifigenia smila, maria zeniou (nidcap professional), skevi andorka, christoulla vasiliou, eleftheria konstantoulaki, stalo ioannou, matina lamari. global perspective of developmental care – cyprus pani pantelides, pt consultant neonatal physiotherapist and early intervention specialist senior faculty of the family and infant neurodevelopmental education (fine) nidcap professional, ndt developmental observer • 2020 • 11 caregiving, improved practical skills in developmental care and minimized the gap between training and practical skills. unfortunately, due to overcrowding and understaffing of the nicu, (1 nurse for 4-6 newborns in intensive care and 1 nurse for 8-10 newborns in special care) the above measures faded and the standard application of protocols became inconsistent. finding ways to train our staff was always a big challenge for us and the shortage of nurses inevitably reduces training time. fine (family and infant neurodevelopmental education) was the next big step in family centred care for both nicus thanks to the director of the ministry of health’s nursing services, andreas xenophontos, who passionately supported fine training and has put it under his auspices. this course is mostly taught in greek by myself and dr maria zeniou under the direction of dr inga warren. the goal is for all staff in the nicus, to follow fine 1 and for those possible, fine 2. until recently, five staff members have completed fine 2 and three more are in the final stage. we have also been able to work with dr warren to introduce fine 1 and fine 2 in greece. unfortunately, due to the covid-19 pandemic we had to postpone our second fine 1 training. in nicosia, despite the difficult conditions mentioned above, some basic elements of nidcap implementation have been achieved. there are measures taken towards comfortable and developmentally supportive handling, positioning, limitation of noise, light and other environmental stimuli and protection of sleep. moreover, some first steps have been made for pain management with the use of special pacifiers for premature babies and positioning aids and a protocol to use sucrose or human milk is in development. sometimes stressful/painful procedures take place during kangaroo care, the implementation of which lately has been expanded in the intensive care rooms as well. parents’ interaction and involvement in their baby’s care is slowly progressing. until recently, parents were allowed to be in any room of the nicu for only one hour at noon and one hour in the afternoon. resistance to parents’ participation, partly driven by concerns about overcrowding (the intensive care rooms are extremely cramped), is gradually being overcome with fine training. as a result, since the beginning of 2020, parents are welcomed for one hour at noon and for two hours in the afternoon in the intensive care rooms and for 12 hours (7:00-19:00) in the special care rooms. care giving from parents is allowed only in special care and includes only feeding, bathing and kangaroo care. the goal is to enable parents to be in all rooms in the nicu any time on a daily basis and take care of their babies completely. last but not least, the archbishop makarios hospital in nicosia is working towards becoming a baby friendly hospital with steps to support breast feeding in the unit and the use of human milk. the limassol nicu was upgraded from level iia to iib, in 2018 and is fortunate enough to have a full time nidcap professional, dr maria zeniou, as developmental care leader, who in addition to her medical duties, leads the developmental care team which includes a fine 2 trained developmental physiotherapist and members of the nursing staff who have attended the fine i course. the continuous presence of a specialised physiotherapist is crucial for the newborns’ neurodevelopment and the training of the parents for the post nicu period. in addition, all the staff is duly trained in order to control and minimize environmental stimuli. remarkable effort has been made in limassol to implement family centred care. parents are welcomed 24/7 and they take full care of their babies from the moment they come out of the incubator. they are guided for kangaroo care on a daily basis and maternal breastfeeding is encouraged from birth as the limassol hospital is close to becoming a baby friendly hospital. moreover, there is a protocol to use sucrose or human milk during painful procedures and there is always someone available to support and comfort the newborn. all necessary care giving procedures are planned in order not to interrupt newborns’ sleep. our next big step towards family centred care in cyprus is the upcoming renovation of the nicu in nicosia. with this renovation, among other things, a resting area will be created for parents with the possibility of sleeping and preparing simple meals and more bedside space will be available for a kangaroo care chair to fit and for parents to be more involved in their baby’s care. in addition, there will be an upgrade of the nicu's sound insulation. none of the above would have been achieved without the generous support of the parents’ organization, “thermokoititha agapis” (“incubator of love”) which organizes and finances all staff training regarding developmental care, provides the two nicus with developmental care equipment and has taken over, in collaboration with the ministry of health, the renovation of the nicu in nicosia. last but not least, the full membership of “thermokoititha agapis” in efcni proved to be crucial and extremely valuable, not only for the implementation in cyprus of the european standards of care for newborn health: standards on infant and family centred developmental care (2018), but also for the negotiations with the ministry of health and other stakeholders, on the matter. pani pantelides consultant neonatal physiotherapist and early intervention specialist demonstrating positioning using a doll. 12 • 2020 • developmental observer my nidcap journey as an interpreter michiko doi, ba freelance japanese – english conference interpreter as i begin to write this article, i can’t help but think of all the healthcare professionals around the world who are in the midst of the very difficult fight against the new coronavirus. they have their own families and friends as well as themselves to care for, and yet they are giving all they can to save people afflicted. my sincerest gratitude and respect goes to them. their dedication, however, is not only in times of emergency. it is constant so constant that people may take it for granted. childbirth also tends to be taken for granted. it is regarded as something that just happens, often without any problems. now i know that it is not, especially when a baby is born early for some reason, and that is when everybody involved strives to provide the best possible care in their respective capacities. my experience as an interpreter in the nidcap trainings in japan has taught me this. i am not in the healthcare field. i am a japanese-english interpreter by profession. recently, in response to the growing need of international interactions in healthcare, i have often been asked to serve in healthcare-related conferences and technical visits. the nicu, however, had been an unknown world to me until i first stepped into one in 2007. what i am about to share with you are the observations of a complete outsider. this outsider, however, has a keen interest in people, especially in a growing child as a biological and social being. so i knew even before actually becoming involved in the nidcap training as an interpreter that i was going to enjoy it. my encounter with nidcap and the journey which followed have been a truly rewarding and inspiring experience for me. the beginning it was in nagasaki in 2004 that i met dr akiyama, then a professor of orthopaedic surgery at nagasaki university hospital, when he organized a conference on early developmental intervention for high-risk newborns. as is always the case, i asked for relevant information such as the speakers’ cvs, their presentation materials and recommended literature. these are doi: 10.14434/do.v13i2.31057 introduction thirteen years ago i had the opportunity to go to tokyo, japan with heidelise als to participate in a special seminar on developmental care. we were introduced to michiko doi who not only provided the professional translation of our lectures, but remained with us throughout our entire stay providing both interpreting and cultural guidance as needed. little did i realize the lifelong professional and personal relationship that would evolve between us. michiko provides her insight into some of the difficulties for respected and experienced neonatal professionals to absorb new perspectives as nidcap trainees. she has demonstrated enormous patience as she interprets our complex discussions on some of the very subtle and nuanced aspects of caring for infants and families. as michiko states, there is often more than mere translation required to communicate many of our nidcap terms and concepts. michiko is the most flexible yet sturdy bidirectional bridge for our nidcap training communication. this involves both language and its inseparable cultural contexts. she has been indefatigable in her support of me from early mornings through late evenings, including professional work and social gatherings, from my arrival in japan until my departure year after year. not only has michiko provided her excellent service as an interpreter for the nidcap work in japan, she has become the informal national advisor and counsellor as well as champion of all those involved in this work. while i have had the privilege and joy to be the nidcap master trainer for japan articulating the voice of the newborn, michiko has been my japanese voice, for which i am most appreciative of her time, patience and trust. gretchen lawhon, phd, rn, faan clinical nurse scientist with newborn special care associates, pc at abington jefferson health nidcap master trainer with west coast nidcap and apib training center michiko doi developmental observer • 2020 • 13 very important for interpreters to make good preparation for the day. i usually start by grasping general ideas of the topic through reading all information available, then familiarise myself with the terms and expressions in both japanese and english, and also do some research to deepen my own understanding of the topic. in the process, i came across some key concepts and terms, and among them was the name ‘t. berry brazelton’. it turned out to be quite a challenge for me mainly because the information available in japanese was rather limited. with the kind help of dr akiyama and his colleagues i survived. in july of 2007 an opportunity presented itself to translate at a seminar with dr heidelise als and dr gretchen lawhon at tokyo women’s medical university hospital. this offer came from dr ohgi, once a collaborator with dr akiyama and then a professor of physical therapy at st christopher’s university in hamamatsu. it was a two-day seminar including both lectures and demonstrations, which, in fact, became the first milestone for nidcap in japan. i remember the room was packed with an enthusiastic audience and filled with expectations for something innovative. dr nishida, then a professor of neonatology and the organiser of the seminar, later confessed he himself had little idea about what to expect because nidcap, at least then, was largely unknown in japan. therefore, there was almost no relevant information available in japanese. all i had with me was the power point presentations prepared by the speakers, which had kindly been provided well in advance. i studied them very hard. dr als and dr lawhon were kind enough to answer the many questions i had to ask for clarification. the fruit of this seminar was evident; it generated a momentum to move forward with nidcap. as a companion in 2009, the first nidcap professional training began at tokyo metropolitan hospital, bokuto, for four trainees with gretchen. i don’t think i need to go over the process here. so, instead, i would like to share some of my experience as an interpreter during the training. the interpreter is supposed to help fill the gaps, or become a bridge in communication. like any two languages, japanese and english are different from each other in many ways. i usually find technical terms are easier to cope with because they usually have a one-on-one match in any two languages, so the interpreter’s work is mainly to memorise. the nidcap terms and expressions, however, have more nuances. you really have to think what word or expression is most suitable in a given context, especially knowing that your translation will probably be used for some time in the future. some terms in the observation sheet needed more than translation. we even asked gretchen to physically demonstrate them so that we could clearly grasp the link between the japanese translation of the terms and their meanings! communication doesn’t rely only on languages. perfect translation doesn’t always guarantee quick communication. in the training, professional backgrounds play a big part. experienced, caring trainers like gretchen and joy browne have wide and profound insight into gaps arising from different backgrounds and they are prepared. the trainees, on the other hand, are likely to be trapped by such gaps, especially when they are trying to see something familiar to them in the different light. of course, they have good reason to be. they struggle because their knowledge and experience interfere with the absorption of new perspectives. this creates a gap. gretchen lawhon and michiko doi. 14 • 2020 • developmental observer there are also gaps stemming from differences in various systems in society including healthcare. with the word ‘nicu’, for instance, the picture that you may draw in your mind may be quite different from someone else’s. what exists in one country or hospital may not exist in another; what is possible in one country or hospital may not be so in another. gaps can be much more complex. so we have to be conscious of the possibility of such gaps and work towards a common understanding, and the interpreter walks the process as a companion. the beauty of all this in the training is that often this kind of struggle leads to a better understanding of the subject, and more importantly it nurtures a better relationship between the trainees and the trainer, among the trainees themselves and among all involved including the interpreter. it requires time, patience and trust in what you do regardless of the roles. i have witnessed many moments of such connectedness, and i am always impressed and supported by the nurturing attitude which dominates the team. currently in japan there are nineteen nidcap professionals and four are in training, involving seven hospitals. five are in training to become trainers. how exciting! thoughts on universal values in nidcap much of my nidcap experience has been new to me, but i’ve never felt anything about it remote or irrelevant. nidcap, at its core, has some universal values which all humans can relate to and benefit from. let me mention just a few. observation may appear to be a passive activity, but it is not. fully committed observation like in nidcap can reveal so much so deeply. it is an active listening. it is from there that we gain an understanding and develop ideas and thoughts and eventually translate them into action. reflection is another form of observation, that is, to observe your own thoughts and feelings, which i think is very important for everyone. in some cultures like japanese culture, correcting weaknesses is more emphasized than acknowledging strengths. nidcap tells us we all have strengths to build upon from which to grow, however small we may be. ‘small’ in this case can refer to the physical or to ability and capability. nidcap also reminds us that we grow in relationships. subtlety is another characteristic of nidcap. as an interpreter, i always need to be conscious of it and have solutions. whenever i am tempted to think that there should be an easier way of describing something, i quickly remind myself that simplification in words may result in the dilution, if not loss, of the real meaning. while languages can open up so much space for positive communication, they also have limits when they are used just as signs and labelling for convenience. in this sense, the interpreter is just a bridge, and it is all up to the people on both ends whether they walk cross it to meet or not. of course, i, as an interpreter, want to be a good strong bridge. towards an end and beyond in japan, the training of nidcap trainers is underway and we are hoping to see the first japanese nidcap trainers certified within the year. a national training centre with a multihospital structure is also in development. when all this has been achieved, my work as an interpreter will end. sad personally, but for japan it’s really a huge celebration for the babies and their families, nicu staff, hospitals and society at large. dr nishida, the honorary chairperson of japan developmental care research association (jdcra), has long been the principal author of ‘scientific basis of clinical neonatology’, one of the most valued and widely used textbooks in the field in japan. a very important section was added to the latest 2018 edition: synactive theory and nidcap. it is brief but extremely significant because it is read by not only medical students but also students in nursing and other healthcare disciplines. they may not see its significance right away, but at least they know there is such an approach. the section concludes with the following remark: “. . .developmental care skills and knowledge integrating nidcap as a pivot will be put into practice more widely in (japanese) nicus in the near future.” remarks made by a japanese neonatologist left a deep impression on me. he said, “our unit has achieved the country’s best survival rate for some years. we are proud of this, but we know it is not enough. we cannot say, ‘you are fine and ready to go home, so good-bye,’ when we know their lives will go on much longer. nidcap may provide us with a clue as to what action to take to achieve a better prognosis.” the jdcra, the engine of nidcap in japan, has updated its website. although most of it is in japanese, you may still get a feel for what’s going on in this part of the world. i feel i have left out so many important people who deserve much credit in building the initial foundations of nidcap in japan. i can only hope that the readers will have the opportunity to meet at least some of them in future nfi meetings.dr hiroshi nishida, dr gretchen lawhon and ms michiko doi. model of the nidcap nursery: from self-assessment to nidcap nursery certification (deborah buehler, phd, sandra kosta, ba, heidelise als, phd, september 2018) the figure graphically describes the relationship of training and support opportunities to nursery change from conventional care to consistently well-integrated nidcap care. it depicts the roles and relationships of newborn nursery components and the support opportunities offered to nursery professionals and staff engaged in this change process. the infant and family are depicted at the nursery’s core, cared for by the professionals and staff within the nursery and hospital. the hospital is understood as part of a greater community, a community from which infants and families come and to which they hope to return. the core of the figure shows the infant-parent relationship as it moves from one of infant isolation from the parents (conventional care; bottom) to one of full emotional and physical integration of infant and parents (nidcap care; top) within the nursery. the gold standard for excellence in newborn individualized developmental care model of the nidcap nursery supports for nursery change continued mentorship for self-assessment, reflection, education and training nidcap & apib training for core teams and nursery assessment review introductory/ foundational education (e.g., nfi nursery foundation education, fine, and other nfi-endorsed conferences & courses) for all professionals & staff interdisciplinary (incl. parents) goal setting and planning d. buehler, s. kosta, h. als© nidcap federation international, march 2018 nursery self-assessment: identification of strengths & challenges process of nidcap care implementation highly attuned nidcap care nursery certification consistently well-integrated nidcap care variable nidcap care nidcap beginnings conventional care family professionals & staff hospital & nursery professionals & staff nursery & hospital family infant & parents parent parent key: newborn commun ityc o m m unity philosophy & implementation of care 16 • 2020 • developmental observer the barcelona nidcap training center was opened in december 2011 at the same time as the hospital 12 de octubre nidcap training center in madrid. the entire process of making the center ready was possible due to the collaboration between both hospitals and the tireless support of graciela basso, md and heidelise als, phd. currently our center has two sites: the hospital vall d'hebron in barcelona and the hospital dr josep trueta in girona. the three nidcap trainers are fatima camba, estrella gargallo and josep perapoch. our goal is to offer nidcap training in hospitals of neighboring countries and, at the same time, contribute to the implementation of a nidcap-based model of newborn care in all hospitals within spain. collaboration is likely the key word that best defines us as a center. collaboration is one of the main values of our activity. our challenges include the lack of time and financial resources, and perhaps this is a reason that has helped us to take part in some collaborative projects. some of our projects are listed below, as they may serve as inspiration for other teams: • with professionals and friends at the 12 de octubre hospital in madrid, we collaborated through the hera project in broadcasting and training projects for developmental care throughout the country. we also collaborated in different research studies. • with other hospitals of the catalan institute of health and support of administration, we established a working group for the application of nidcap-based newborn care in all hospitals (padeics-nidcap working group). the catalan institute of health is a hospital system providing care for approximately 45% of the very low birth weight newborns in catalonia. • with the groups of parents and professionals of working group hospitals, we held a workshop in 2016 to define the nine lines of nidcap training centers around the world the barcelona nidcap training center barcelona nidcap team doi: 10.14434/do.v13i2.31062 developmental observer • 2020 • 17 improvement in individualized newborn care focused on development and the family. this document is the basis of all the improvement actions that have been used to work together during the last four years. • through collaboration with professionals and families, the “germans” project to facilitate the inclusion of sibilings was started. (https://youtu.be/amiuqhis1ls) • with other hospitals and training centers of the iberian peninsula, we collaborated in eight editions of the "nidcap iberian meeting". • collaborating with administration and the university, we promoted development of a guide for parents of premature newborns, which is distributed in all hospitals. as nidcap has no limits, our projects and dreams are being renewed. these are the challenges we would like to achieve in the near future: • work closely with the hospital sant joan de deu, the other large barcelona hospital that is currently in the process of accrediting itself as a training center, to facilitate the application of nidcap in all the hospitals of the country. • incorporate a new professional nidcap trainer to our team. • obtain administration support for training to achieve the availability of nidcap professionals in all hospitals. • repeat a working day with families. this is currently scheduled for november 17, 2020, yet may be rescheduled due to the coronavirus pandemic. • gain the ability to apply the fine2 training program. • finish a project started two years ago to offer introductory training in developmental care in an online format. newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org 18 • 2020 • developmental observer the exposure to cumulative stress during critical neurodevelopmental windows early in life is a major unresolved challenge of modern newborn intensive care. in sharp contrast to the soothing environment of the womb, life-saving care provided in the newborn intensive care unit (nicu) exposes preterm infants to numerous painful and stressful interventions while separated from their mother. the experience of repetitive exposure to stress places preterm infants at risk since significant maturational processes take place in the fetal brain during the second half of gestation. these include synapse formation (synaptogenesis), programmed cell death (apoptosis), proliferation of glia cells, and the beginning of myelination. as a result of premature birth, these processes occur in a time span when the preterm infant is hospitalized in the nicu. the protection afforded by the intra-uterine environment is no longer available, leaving the infant's developing brain vulnerable to different environmental stressors. studies that explored the impact of increased exposure to stress factors in the nicu,1,2 demonstrated alterations in brain neural connectivity, increased apoptotic processes that led to decreased regional brain volume and delayed maturation of the white matter at term age. decreased regional brain volumes were found in former preterm infants even at seven years of age.3 furthermore, a growing body of evidence, from both animal and human studies, indicate that stress experienced during the fetal and neonatal period is associated with substantial long-term neurodevelopmental morbidity.4 despite the increasing evidence regarding the impact of stress on brain development of preterm infants, the mechanisms underlying these shortand long-term developmental influences remain largely unexplored. in the reviewed article, nist and her colleagues present a new conceptual framework: the neonatal stress embedding (nse) model. they put forward an explanation grounded on the biological effects that newborn stress exposure in the nicu might have on shortand long-term neurodevelopment. the authors hypothesize that stress affects brain structure and function through alterations in four biological systems: the immune system, the autonomic nervous system (ans), the hypothalamic-pituitary axis (hpa), and gene expression. these four systems interact with each other and most importantly, they can be modulated by both pre-natal and postnatal environmental variables like parental stress and maternal interaction (figure 1). the nse conceptual model might be appealing to clinicians since it is consistent with known concepts of the developmental origins of health and illness. the biological embedding of childhood adversity model 5 postulates that early life stress such as childhood maltreatment, neglect, and violence, affects subsequent adult health outcomes. it provided the theoretical framework for the nse model presented by nist and colleagues in this review. fetal and/or neonatal inflammatory processes have been long associated with adverse neurodevelopmental outcomes in the perinatal literature.6 inflammation is actually considered a common underlying mechanism in the multifactorial origins of several morbidities related to prematurity, such as bronchopulmonary dysplasia (bpd), retinopathy of prematurity (rop) and necrotizing enterocolitis (nec). studies from both adult and neonatal animal models have revealed that chronic stress responses are associated with systemic inflammation. newborn animal models further suggest that exposure to stress directly activates nervous system cells called microglia, known to play a role as primary regulators of immune responses in the brain. however, studies assessing the effect of stress on the immune function in preterm infants are still missing. the involvement of both the autonomic nervous system (ans), and the hypothalamic-pituitary axis (hpa) in stress responses is well documented. their integration into the nse model therefore seems logical, yet not thoroughly studied in this age group. in newborn infants, exposure to stress results in increased sympathetic and decreased parasympathetic activity, as measured by changes in heart rate variability (hrv). limited evidence from infants affected with sepsis suggests that decreased parasympathetic activity measured by hrv is a predictor for future neurologic impairments in preterm infants. however, the change in hrv might only be a marker for central nervous target article: nist md, harrison tm, steward dk (2019). the biological embedding of neonatal stress exposure: a conceptual model describing the mechanisms of stress-induced neurodevelopmental impairment in preterm infants. res nurs health, 42:61–71. doi: 10.1002/nur.21923 understanding the biologic effect of stress on the developing brain, and insights from the covid-19 pandemic ita litmanovitz, md neonatal department, meir medical center, kfar-saba, israel, affiliated to sackler school of medicine, tel-aviv university, tel-aviv, israel israel nidcap training center. nidcap & science sub-committee, nfi t h e s c i e n c e d e s k doi: 10.14434/do.v13i2.31060 18 • 2020 • developmental observer developmental observer • 2020 • 19 system involvement, rather than the actual cause of the neurologic insult. chronic stress exposure is also known to cause repeated activation of the hpa axis, resulting in glucocorticoid resistance. salivary cortisol levels measured before and following exposure to a stressor were lower in preterm as compared to term-born infants. changes in the hpa response were demonstrated at school age and were associated with cognitive and attention problems.7 many of the mediators linking stress exposure and neurodevelopment are, in turn, mediated by epigenetic changes in gene expression occurring postnatally, as discussed in detail by jeff alberts in a recent issue of the developmental observer.8 the article by nist and colleagues provides a comprehensive review on the topic of newborn stress and its impact on preterm infants. the article utilizes accepted models of the developmental origins of health and illness to shed new light on the impact of stress on preterm infant brain development. thereby, it underlines the need for implementing caregiving approaches aimed at reducing and modulating infants' exposure to stressful stimuli and experiences at the bedside as postulated by nidcap-based care to improve the outcomes of preterm infants. the limitation of the model is that the evidence base of the proposed concept is not strong enough, as it consists mostly of studies of human adults and of animal studies. however, gaps in evidence surely provide opportunities for new areas of research. studies that will explore and test the suggested model might help to identify infants at risk as well as interventions needed based on their risk profiles. the authors emphasize the role of nurses in practice changes (perhaps because the paper is published in a nursing journal) however, optimization of neurodevelopmental outcomes should be the priority for all clinicians caring for preterm infants. therefore, the model presented might be meaningful for all health caregivers in the nicu including decision and policy makers –when adopting practices that reduce stress in the nicu. reviewing this article in the midst of the covid-19 pandemic presented a welcome opportunity to reflect on this topic. it assisted me, as a neonatologist, to better cope with the challenges generated for hospitalized infants, families, and health care professionals. during the last months, the lived experience of a global pandemic has been extremely stressful for parents, families, and healthcare professionals; stress that might adversely affect the outcome of the preterm infants. within these extreme circumstances, in order to keep infants and health care providers safe, some nicus have adopted policies that drastically separate these medically fragile infants from their parents. it appears that some of the new guidelines implemented as a result of the pandemic lack a comprehensive perspective, and seem to disregard the basic understanding that parental physical and emotional closeness in early life is a cornerstone of optimal infant growth and development. maternal stress and depression have been shown to have adverse neurodevelopmental effects in infants9 and may enhance the deleterious effect of newborn stress. conversely, maternal closeness and early interaction may moderate infants' physiologic stress responses, affecting the degree to which stress exposure might impact neurodevelopment. maternal-infant contact as provided during kangaroo care can lessen stress responses and promote positive neurodevelopment.10,11 more parental presence and holding in the nicu have been found to be associated with better outcomes.12 especially during this stressful time, strategies to enhance sensitive parenting and positive family processes will provide a developmentally appropriate environment.13 i started my review by stating that infant exposure to cumulative stress in the nicu is a major unsolved challenge in developmental observer • 2020 • 19 figure 1. neonatal stress embedding model. ans, autonomic nervous system; hpa, hypothalamic-pituitary-adrenal. (adapted from nist et al. 2019). 20 • 2020 • developmental observer implementing nidcap with new challenges, new ways to connect hosted by the nfi 21–23 october 2020 1800 2130 gmt this will be a virtual meeting by invitation only, using an online platform. further details will be circulated via the nfi googlegroup list. newborn care. when contemplating the nse model, i deduced the reader might initially be inclined to think mostly about the experience of stress in the nicu and its potential adverse effects on preterm infants' development. this is, in my view, the desired starting point from which to approach the newborn's bedside: to have an awareness of the potential harm that our caregiving and procedures can cause. and yet, when i read the article again and let my background as a nidcap-trained and experienced neonatologist guide my reflection, i found myself thinking less about the potentially negative experience of stress, and much more engaged in envisioning the nearly boundless possibilities we have to ease and buffer that stress in the nicu. because stress experiences have a biological embedding, as the nse model proposes, the infant's expectation for maternal closeness, physical contact and relationship is certainly biologically embedded as well. we know the brain of the human infant is wired for relationships and early physical contact.14,15 by capitalizing on resources readily available in every nicu (infants, parents, love, and the unspoken yearning for closeness and relationship), we can do a meaningful job in reducing and buffering the experience of stress for preterm infants. a nidcap-based education gives us, as clinicians, two unique tools to accomplish this important "stress-reducing" job: our skills to observe infant stress and communicate it to those who care for them, and our unequivocal understanding that parents are the infants' most consistent and reliable caregivers. references 1. smith gc, gutovich j, smyser c, pineda r, newnham c, tjoeng th, inder t. (2011). neonatal intensive care unit stress is associated with brain development in preterm infants. annals of neurology, 70(4):541–549. https://doi.org/10.1002/ana.22545 2. vinall j, miller sp, bjornson, bh, fitzpatrick kp, poskitt kj, brant r, grunau re. (2014). invasive procedures in preterm children: brain and cognitive development at school age. pediatrics, 133(3):412–421. https://doi.org/10.1542/peds.2013-1863 3. ranger m, chau cm, garg a, woodward ts, beg mf, bjornson b, grunau re. (2013). neonatal pain-related stress predicts cortical thickness at age 7 years in children born very preterm. plosone, 8(10): e76702. https://doi.org/10.371/journal.pone.0076702 4. cong x, wu j, vittner d, xu w, hussain n, galvin s, henderson wa. (2017). the impact of cumulative pain/stress on neurobehavioral development of preterm infants in the nicu. early human development, 108:9 –16. https://doi.org/10.1016/j.earlhumdev.2017.03.003 5. berens ae, jensen skg, nelson ca. (2017). biological embedding of childhood adversity: from physiological mechanisms to clinical implications. bmc med, 20;15(1):135. doi: 10.1186/s12916-017-0895-4. review. 6. carlo wa, mcdonald sa, tyson je, et al. (2011). cytokines and neurodevelopmental outcomes in extremely low birth weight infants. j pediatr. 159(6): 919–925. .e3. doi: 10.1016/j.jpeds.2011.05.042. pmid:21798559 7. grunau re, cepeda il, chau cm, brummelte s. weinberg j, lavoie pm, turvey se. (2013). neonatal pain-related stress and nfkbia genotype are associated with altered cortisol levels in preterm boys at school age. plos one, 8(9), e73926. https://doi. org/10.1371/journal. pone.0073926 8. alberts j. (2020). a funny thing happened on the way to the hospital. developmental observer, 13 (1):22. doi: 10.14434/do. v13i1.29094. 9. stanley c, murray l, stein a. (2004). the effect of postnatal depression on mother infant interaction, infant response to the still-face perturbation, and the performance on an instrumental learning task. development and psychopathology, 16:1-18. 10. feldman r. (2004). mother-infant skin-to-skin contact and the development of emotion regulation. in s. p. shohov (ed.), advances in psychology research (pp. 113-131). hauppauge, ny; nova science. 11. feldman r, eidelman ai, sirota l, weller a. (2002). comparison of skin-to-skin (kangaroo) and traditional care: parenting outcomes and preterm infant development. pediatrics, 110, 16-26. 12. reynolds lc, duncan mm, smith gc, mathur a, neil j, inder t, pineda rg. (2013). parental presence and holding in the neonatal intensive care unit and associations with early neurobehavior. journal of perinatology 33:636-641. 13. pineda r, bender j, hal lb, shabosky l, annecca a, smith j. (2018). parent participation in the neonatal intensive care unit: predictors and relationships to neurobehavior and developmental outcomes. early hum dev,117:32-38. doi: 10.1016/j.earlhumdev.2017. pmid: 29275070 14. schore an (1994). affect regulation and the origins of the self: the neurobiology of emotional development: hillsdale, nj 15. siegel dj (1999). the developing mind. how relationships and the brain interact to shape who we are. 3rd ed. the guilford press. developmental observer • 2020 • 21 p u b l i c at i o n s 2 0 1 9 – 2 0 2 0 2019 1. alvarez mj, rodriguez-gonzalez d, roson m, lapena s, gomez-salgado j, fernandez-garcia d. effects of massage therapy and kinesitherapy to develop hospitalized preterm infant's anthropometry: a quasi-experimental study. journal of pediatric nursing. 2019, 46:e86-e91. doi: 10.1016/j.pedn.2019.03.015 the implementation of a massage therapy and kinesitherapy protocol is beneficial for the anthropometric development of hospitalized preterm infants. an easy to administer and costeffective intervention such as massage therapy and kinesitherapy can improve the anthropometric development of preterm infants and reduce growth-related morbidity in the short, medium, and long term. 2. baghlani r, hosseini mb, safaiyan a, alizadeh m, arshadi-bostanabad m. neonatal intensive care unit nurses' perceptions and knowledge of newborn individualized developmental care and assessment program: a multicenter study. iranian journal of nursing and midwifery research. 2019, 24:113-117. doi: 10.4103/ijnmr.ijnmr_54_18 this cross-sectional study was conducted on 149 nurses working in the nicus across iran. three questionnaires were used to collect demographic data and to explore the nurses' perceptions and knowledge of the nidcap program. the results of this study showed that the majority of nurses participating in the study had high knowledge about nidcap. 3. butler s, sadhwani a, stopp c, singer j, wypij d, dunbarmasterson c, ware j, newburger j. neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. congenital heart disease. 2019, 14(2):236-245. doi: 10.1111/chd.12686 the neurodevelopment of a convenience sample of high-risk infants following cardiac surgery but before hospital discharge were evaluated using an adaptation of the newborn behavioral observation. at discharge, postoperative infants with chd had impairments in autonomic, motor, attention, and state regulation following cardiac surgery. findings suggest that neurodevelopmental follow-up and intervention should begin early in infancy. 4. chuang lj, wang sh, ma mc, lin cn, chen c, huang m. a modified developmental care bundle reduces pain and stress in preterm infants undergoing examinations for retinopathy of prematurity: a randomised controlled trial. journal of clinical nursing. 2019, 28(3-4):545-559. pmid: 30091495, doi: 10.1111/jocn.14645 to determine the comparative efficacy of developmental care versus standard care for reducing pain and stress in preterm infants during examinations for retinopathy of prematurity (rop). since the results show the benefits of developmental care in an rop examination, it can be the practical evidence basis by which to develop a standard of procedure or guideline for clinical practice. 5. griffiths n, spence k, loughran-fowlds, westrup b. individualised developmental care for babies and parents in the nicu: evidence-based best practice guideline recommendations. early human development. 2019, 139. doi: 10.1016/j.earlhumdev.2019.104840 the application of a systematic approach to improve practice is considered the most effective strategy for implementing neuroprotective developmentally supportive care. the content of this paper incorporates evidence-based systematic reviews to guide clinicians in the application of developmentally supportive interventions. 6. mirlashari j, valizadeh s, navab e, craig j, ghorbani f. dark and bright-two sides of family-centered care in the nicu: a qualitative study. clinical nursing research. 2019, 28:869-885. doi: 10.1177/1054773818758171 the aim of the study was to explore the lived experiences of nicu nurses on implementing fcc. this study provided deeper understanding about nurses' perceptions of fcc implementation. in muslim developing countries, fcc implementation is challenging and nurses are under extra pressure because of a shortage in nursing workforce; however, having positive experiences with family participation and valuing their beliefs allowed them to support family involvement. 7. painter l, lewis s, hamilton b. improving neurodevelopmental outcomes in nicu patients. advances in neonatal care. 2019, 19(3):236-243. doi: 10.1097/ anc.0000000000000583 the following are a selection of publications from late 2019 to early 2020 relevant to nidcap. doi: 10.14434/do.v13i2.31063 22 • 2020 • developmental observer the purpose of this study was to measure the effectiveness of a developmental positioning intervention on length of stay, weight gain, and tone/flexion compared with neonates without structured positioning. with greater structure and consistent attention to developmental positioning, outcomes are positively affected. further research with larger sample sizes will identify stronger associations and relationships between positioning and outcome measures. 8. park j, kim js. factors influencing developmental care practice among neonatal intensive care unit nurses. journal of pediatric nursing. 2019, 47:e10-e15. doi: 10.1016/j. pedn.2019.03.014 this study found that professional efficacy had the largest influence on developmental care practice, followed by perception of developmental care, and a task-oriented organizational culture. clinical and educational experience regarding developmental care and working environment was not associated with developmental care practice. a practical training program should be provided to nurses to promote confidence in implementing developmental care for preterm infants. 9. shanty l, dowling r. sonnenschein s, hussey-gardner b. evaluation of an early language and literacy program for parents of infants in the nicu. neonatal network. 2019, 38(4):206-216. doi: 10.1891/0730-0832.38.4.206 to evaluate the effect of a nicu parent education program on parents' early language and literacy practices, and on their confidence interpreting and responding to infant signals. the program significantly increased intention to engage in more early language and literacy practices, and increased parent-reported knowledge of how and when to interact with their infants. the majority of interviewed parents reported engaging in these practices one to two weeks later. 10. treyvaud k, spittle a, anderson pj, o'brien k. a multilayered approach is needed in the nicu to support parents after the preterm birth of their infant. early human development. 2019, 139. doi: 10.1016/j. earlhumdev.2019.104838 a multilayered approach to supporting parents of infants born preterm in the nicu is recommended, with evidence specifically for including layers of individual psychological and psychosocial support, peer-to-peer support, and family centered care. consideration of fathers in the nicu, and areas for future research are also discussed. 2020 11. almadhoob a, ohlsson a. sound reduction management in the neonatal intensive care unit for preterm or very low birth weight infants. ebm reviews cochrane database of systematic reviews cochrane database of systematic reviews. 2020. issue 1. art. no.: cd010333. doi: 10.1002/14651858.cd010333.pub3 to date, 34 infants have been enrolled in a randomized controlled trial (rct) testing the effectiveness of reducing sound levels that reach the infants' ears in the nicu. based on the small sample size of this single trial, no recommendations were made for clinical practice. larger, well designed, conducted and reported trials are needed. 12. anderson pj, treyvaud k, spittle aj. early developmental interventions for infants born very preterm – what works? seminars in fetal and neonatal medicine. 2020, online may 15 doi:10.1016/j.siny.2020.101119 although early developmental interventions vary widely in focus, timing, and mode of delivery, evidence generally supports the effectiveness of these programs to improve specific outcomes for children born very preterm and their families. however, little is known about mechanisms for effectiveness, costand long-term effectiveness, which programs might work better for whom, and how to provide early intervention services equitably. this information is critical to facilitate systematic integration of effective developmental interventions into clinical care for infants born very preterm and their families. 13. bembich s, trappan a, galimberti a,taglieri j, scolz s, risso fm, sanson g. the role of weighing-bathing sequence and postmenstrual age in eliciting adaptive/ maladaptive responses in very low birth weight preterm infants. journal for specialists of pediatricnursing. 2020;e12292.doi: 10.1111/jspn.12292 responses were assessed using an observational sheet based on als' synactive theory of development. autonomic and motor responses were scored according to five-point likert scales. effects of weighing/bathing execution sequence and post menstrual age (pma) on autonomic and motor response scores were analyzed by linear multiple regression analysis. the real-time recognition of adaptive/maladaptive responses allows nurses to personalize their approach to preterm infants, taking into account pma and adjusting the appropriate sequence of execution of weighing/bathing nursing procedures. 14. buil a, sankey c, laurence c, apter g, gratier m, devouche e. fostering mother-very preterm infant communication during skin-to-skin contact through a modified positioning. early human development. 2020, 141. doi: 10.1016/j.earlhumdev.2019.104939 the study shows that supported diagonal flexion (sdf) positioning creates more opportunities for mother-infant communication during ssc. sdf positioning fosters a greater multimodal developmental observer • 2020 • 23 temporal proximity, thus supporting a more qualitative motherinfant communication. 15. govindaswamy p, laing sm, waters d, walker k, spence k, badawi n. fathers' needs in a surgical neonatal intensive care unit: assuring the other parent. plos one. 2020, 15(5):e0232190. doi: 10.1371/journal.pone.0232190 reassurance is a priority for fathers of neonates in a surgical nicu, particularly regarding infant pain management and comfort. it is important that health-care professionals provide reliable, honest information and open-access visiting. notably, fathers seek greater recognition of their role in the nicu, beyond being the 'other' parent. 16. griffiths n, james-nunez k, spence k, crowle c, pettigrew j, loughran-fowlds a. the evolution of an interdisciplinary developmental round in a surgical neonatal intensive care unit. advances in neonatal care. 2020, may 06, volume publish ahead of print. doi: 10.1097/ anc.0000000000000741 this article provides retrospective audit data of a developmental round intervention in the surgical neonatal intensive care unit with a focus on data over four years to highlight key areas, including the structure and process, recommended educational standards for team members, and parental engagement, as key markers for developmental round efficacy. future research should focus on the link between the developmental round intervention and long-term neonatal outcomes. 17. jannes c, miedaner f, langhammer k, enke c, göpel w, kribs a, nitzsche a, riedel r, woopen c, kuntz l, roth b. increased parental satisfaction by unrestricted visiting hours and developmentally supportive care in nicus – results of a german multicenter study. the journal of maternalfetal & neonatal medicine. 2020, 33(11): 1874-80. doi: 10.1080/14767058.2018.1532499 very low birthweight infants from 66 nicus in germany were enrolled in this multicenter study. 1493 questionnaires were completed by 1277 parents. the existence of unrestricted visiting hours and standardized procedures for developmentally supportive care were positively associated with parental satisfaction. fostering the parent–infant interaction through the provision of developmentally supportive care and unrestricted visiting hours for parents whose infants are hospitalized within an nicu significantly contributes to the satisfaction of parents. 18. johnson mr, helm jm. neonatal and early infant development. north carolina medical journal. 2020, 81(1):46-47. doi: 10.18043/ncm.81.1.46 as with neonatal development, the field of infant mental health continues to evolve. another current trend is the development of evidence-based models of both prevention and therapeutic intervention for infants and very young children, including direct parent support and interventions to strengthen the parent-child relationship. the field of infant and young child mental health has also embraced the importance of collaboration with other professionals and service systems. 19. miller ta, lisanti aj, witte mk, elhoff jj, mahle wt, uzark kc, alexander n, butler sc. a collaborative learning assessment of developmental care practices for infants in the cardiac intensive care unit. journal of pediatrics. 2020. doi: 10.1016/j.jpeds.2020.01.043 a collaborative learning approach was used to stratify, assess, and compare individualized developmental care practices among multidisciplinary teams at six pediatric heart centers. the collaborative findings were a first step toward strategies to quantify and measure developmental care practices in the cardiac intensive care unit to assess the association of complex inpatient practices with long-term neurodevelopmental outcomes. 20. mirlashari j, brown h, fomani f, khoshnavay de salaberry j, tahereh k, khoshkhou f. the challenges of implementing family-centered care in nicu from the perspectives of physicians and nurses. journal of pediatric nursing. 2020, 50:e91-e98. doi: 10.1016/j. pedn.2019.06.0 the implementation of family-centered care (fcc) in the neonatal intensive care unit in iran is shaped by the health care provider, cultural, legal and operational challenges. organizational, managerial and operational changes are required for fcc implementation. nurses and physicians are well-positioned as leaders and facilitators of family-centered care implementation within the neonatal intensive care unit. 21. morag i, ohlsson a. cycled light in the intensive care unit for preterm and low birth weight infants. ebm reviews cochrane database of systematic reviews cochrane database of systematic reviews. 1, 2020. doi: 10.1002/14651858.cd006982.pub2 one additional study enrolling 38 participants was included in this update, for a total of nine studies reporting on 544 infants. results from one additional study strengthen our findings that cycled lighting (cl) versus continuous bright light shortens length of stay, as does cl versus near darkness (nd). the quality of the evidence on both comparisons for this outcome according to grade was low. future research should focus on comparing cl versus nd. 24 • 2020 • developmental observer 22. pierrat, v, marchand-martin l, durrmeyer x. vasante l, burguet a, cambonie g, kuhn p, datin-dorrière v, durox m, kaminski m, carbajal r, ancel p-y. neurodevelopmental care study group of epipage -2. perceived maternal information on premature infant’s pain during hospitalization: the french epipage-2 national cohort study. pediatric research. 2020, 87:153– 162. doi: 10.1038/s41390-019-0422-8 analyses of questionnaires from the french national cohort study of preterm neonates, epipage-2. perceived maternal information on infants’ pain (pmip) was derived from mothers’ answers to questions about information perceived on both pain assessment and management. mothers reporting pmip as “sufficient” were more frequently present and more likely comforting their child during painful procedures. factors independently associated with “sufficient” pmip were high maternal education, gestational age <29 weeks, daily maternal visits, perception of high team support, and implementation of the newborn individualized developmental care and assessment program. 23. pineda r, wallendorf m, smith, j. a pilot study demonstrating the impact of the supporting and enhancing nicu sensory experiences (sense) program on the mother and infant. early human development. 2020, 144, doi: 10.1016/j.earlhumdev.2020.105000 to explore differences in maternal mental health and infant neurobehavioral outcome among infants who received and did not receive the supporting and enhancing nicu sensory experiences (sense) program. preliminary evidence demonstrates improvements in maternal confidence and infant neurobehavioral performance following sense implementation. 24. soleimani f, azari n, ghiasvand h, shahrokhi a, rahmani n, fatollahierad s. do nicu developmental care improve cognitive and motor outcomes for preterm infants? a systematic review and meta-analysis. bmc pediatrics. 2020, 20, 67. doi: 10.1186/s12887-020-1953-1 current evidence suggests that developmental care in nicu settings could have significant effects on mental and motor development of preterm infants, especially at 12 months of age. however, because of clinical heterogeneity, more studies are needed to evaluate the effects of developmental nicu care in the development of preterm infants. 32nd annual nidcap trainers meeting september 24–26th, 2021 seminaris hotel bad boll 73087 bad boll, germany (30 km from stuttgart) hosted by the nidcap training center in tübingen, germany (by invitation only) photo by sulox32 (pixabay) photo by hbieser (pixabay) developmental observer • 2020 • 25 julia giesen, nidcap professional-in-training, edmonton, canada p o e t ' s c o r n e r today you showed me something new could it possibly be true? that when you were born you started out whole all systems working as is our goal to have you move between your states with smooth transitions and no mistakes no interruptions to get you there and nothing breaking the moment where you grow and heal and find good rest where your little brain can do its best and here we stand at a fork in the road an opportunity to lay down the code for how you will do in the years ahead will we be with you or will you lay in your bed cycling through trying to breathe on your own your little struggles not being known will you continue to be so strong? or will we pick the road that is long? on our watch “on our watch” doi: 10.14434/do.v13i2.31222 hello from the edmonton nidcap training centre canada, entcc for short! i am julia giesen and i had the pleasure to meet many of you in the world-spanning nidcap community at the nidcap trainers meeting in our fair city in 2017. that meeting inspired me to pursue nidcap training which i started the following spring under the direction of our trainer juzer tyebkhan. initially i found the observations overwhelming. each observation opened my eyes to something i had never seen before, much of it hard to stomach. could our little patients really be having such a difficult time, so often, without us being aware? what must that feel like? and what does that do to them over time? i struggled to get down in words what i was seeing, to describe it accurately and in a way that families would easily understand. i spent hours picking out the words for my reports and the days were long. at the end of the day after hours at the keyboard the last thing i wanted to do was to fill out another form for the journal page. i couldn’t think straight anymore and it felt too raw to reflect on it right away. i took the evening to let things settle in, poured myself a cup of tea, grabbed pen and paper, and wrote. i tried a number of reflection styles but what resonated most for me was to write freely and what ensued were a series of poems. i am sharing some of my poems with you, hoping they help you see what i saw on this great nidcap journey. this first poem is from an observation in january 2019 on a little boy named alex. alex was born at 25 weeks and was six days old. he showed me that the protective effect of the womb may indeed last for several days after birth before beginning to fade as we encounter life on our own. 26 • 2020 • developmental observer developmental observer the official newsletter of the nidcap® federation international developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ 2020 vol. 13 no. 2 nidcap federation international (nfi)founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “rejoice with your family in the beautiful land of life.” albert einsteintable of contentsthe strength of nfi's collective experience ................................................ 1 editorial ...................................................... 2 putting beauty at the heart of the healing process ....................................... 3 reflections on infant feeding ................. 5 global perspective of developmental care – cyprus ........................................... 7 my nidcap journey as an interpreter ................................................. 9 nidcap training centers around the world ........................................................ 12 the science desk .................................... 14 reflection nidcap observation ............ 16 publications ............................................. 17 nidcap on the web ................................ 23 issn: 2689-2650 (online) do 13:2 full issue doi: u se d w ith p er m is si on the strength of the nfi’s collective experience deborah buehler, phd president, nidcap federation international doi: 10.14434/do.v13i2.31171o ne of my very early experiences as a nidcap trainer took me to falun, sweden. while i was there, i shared nidcap’s introductory lecture and guided a few introductory bedside observations. with that visit, the healthcare team learned about nidcap and a new group of nidcap trainees was launched. what i remember most about that trip was how much i learned. my understandings of what was and what could be possible within hospital care was completely expanded by the people i met and the care i observed. during one particular nidcap observation, i vividly remember a mother and her baby and the nurse caring for them. they were so incredibly beautifully attuned with one another that i was mesmerized. over the several days i visited the nursery, i learned that aspects of medical and nursing care could be done in different ways than i had seen practiced in u.s. hospitals. during the breaks of my lecture, i remember a physical therapist leading the whole audience, of physicians, nurses and therapists, through joyful stretching breaks with children’s songs, which included the itsy-bitsy spider. it was evident these small, yet powerful moments of silliness were remarkable for the respect and cohesiveness of the whole healthcare team. i especially remember this nidcap training session, nearly 30 years ago, in part, because it was my first solo international trip which posed challenges on many levels for me. perhaps being stretched in new ways created opportunities to be open to seeing and being shaped by my experiences. this moment in time captured my imagination and continues to inform my nidcap training and mentoring of trainees and health care professionals and their resolve to evolve their care to be ever more supportive. deborah buehler, phd continued on page 2 collaboration and support for each infant's family is the core of nidcap. nidcap care in the momentfamily strength nidcap federation international board of directors and staff 2019–2020 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard.edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com maria lopez maestro, md, phd nidcap trainer hospital universitario 12 de octubre nidcap training center email: mariamaestro@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, mb nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens.harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard.edu issn: 2689-2650 (online) all published items have a unique document identifier (doi) doi: 10.14434/do.v13i2.31223 developmental observer • 2020 • 27 nidcap on the web the nfi's nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap training centers – facebook pages many of the training centers and nidcap groups have established their own facebook pages. these pages provide useful resources for members and by joining the groups and sharing the pages you are helping to spread information about nidcap. here are a few to get you started. if you know of others please send an email to developmentalobserver@nidcap.org for inclusion in the next issue. during the challenging times of the past six months, our nfi community has shown resilience in getting the message across for hospitalized newborns and their families. here is a snapshot of some of the important topics and celebrations supported by the various nidcap training centers. follow us on all of our social media platforms: like us on facebook follow our posts on instagram watch our videos on you tube connect with colleagues on linkedin read and participate on our nidcap blog follow us on twitter http://nidcap.org/blog/ sandra.kosta@nidcap.org developmentalobserver@nidcap.org https://www.facebook.com/nidcap https://www.youtube.com/user/nidcapfi https://twitter.com/nidcap http://nidcap.org/blog/ https://www.instagram.com/explore/tags/nidcap/?hl=en https://www.linkedin.com/company/nidcap-federation-international https://www.facebook.com/nidcap https://www.pinterest.com/nidcap/ https://www.youtube.com/user/nidcapfi https://www.linkedin.com/company/nidcap-federation-international https://www.linkedin.com/company/nidcap-federation-international http://nidcap.org/blog/ http://nidcap.org/blog/ https://twitter.com/nidcap https://www.facebook.com/couveuseouders/photos/a.130167820418251/2569704876464521/ https://www.facebook.com/nidcap/photos/a.1461816374040400/2770556716499686/ https://www.facebook.com/nidcap/photos/a.1461814374040600/2731729160382442/ https://www.facebook.com/nidcapaustralia/photos/a.1697090170597223/2338986006407633/ https://www.facebook.com/worldprematurityday https://www.facebook.com/chcotebasque/photos/a.182970021827953/2142587009199568/ www.nidcap.org nidcap training centers become a member of the nfi the nfi has expanded opportunities for membership. please join us! for more information and the online application form, visit our website at: www.nidcap.org or email us at nfimembership@nidcap.org americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: windy crow email: windy.crow@dignityhealth.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rn, ms contact: jean powlesland, rn, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu carolina nidcap training center wakemed, division of neonatology raleigh, north carolina, usa director and contact: james helm, phd email: jimhelm27@gmail.com nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: alison loughran-fowlds mbbs, dch, fracp, phd and kaye spence am, mn contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, consultalt, phd co-director: majken grund nielsen, rn contact: eva jörgensen, rn email: auh.nidcaptrainingscenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.broghammer@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natafili@yahoo.com rimini nidcap training center ausl romagna, infermi hospital rimini, italy director and contact: gina ancora, md co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: saojoaonidcap@chsj.min-saude.pt spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: stina klemming, md co-director: björn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap@karolinska.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: neil marlow, dm fmedsci contact: gillian kennedy, obe, msc email: gillian.kennedy4@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il http://nidcap.org/en/about-us/membership-overview/ 10 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background although exclusive breastfeeding is recommended for the first six months of life, breastfeeding rates in most developed countries are low. sensory over-responsivity (sor) is a neuro-developmental condition characterized by exaggerated behavioral responses to sensory stimuli not typically perceived as irritating, aversive, unpleasant, or painful. sor was found to severely interfere with everyday activities and quality of life, including having an impact on attachment patterns and maternal competencies. sor and its link to breastfeeding-related pain have not yet been examined as potential barriers to exclusive breastfeeding. aims to explore whether mother breastfeeding-related pain, sensory over-responsivity and daily pain sensitivity are associated with non-exclusive breastfeeding six months after birth. methods mothers of full-term infants were recruited two days after birth in a maternity ward. for the assessment of breastfeeding-related pain, mothers completed the visual analogue scale and the short form-mcgill pain questionnaire at enrollment (t1), and at 6 weeks after birth (t2). at 6 months (t3), mothers completed the pain sensitivity questionnaire and the sensory responsiveness questionnaire (srq) assessing sor, provided information about their breastfeeding status, and were then divided into two groups accordingly: exclusive breastfeeding (ebf) and non-exclusive breastfeeding (nebf). results a total of 164 mothers reached the third time point: ebf (n=105), nebf (partial breastfeeding or formula feeding only) (n=59). the incidence of sor was significantly higher among nebf mothers compared to ebf mothers (25.4% vs. 11.4%, respectively, p=.02). moreover, between t1 and t2, 72.3% of the ebf mothers had reported at least 30% pain reduction, compared to 44.8% of the nebf mothers (p=.001). results also revealed positive correlations between breastfeeding-related pain and the srq-aversive score both at t1 (.268<r<.378; .003<p<.028) and t2 (.296<r<.380; .003<p<.024). logistic regression modeling revealed that both breastfeedingrelated pain reduction between t1 and t2 and sor were found to predict nebf at 6 months (p<.001), indicating a 3.2-times (p=.001) and 2.5-times (p=.041) odds ratio for nebf respectively. conclusion sor and sustained breastfeeding-related pain predict nebf 6 months after birth and may emerge as meaningful breastfeeding barriers. our findings highlight the importance of early identification of women with sensory responsiveness challenges for achieving higher exclusive breastfeeding rates. early interventions, including modulation of unpleasant and overwhelming sensory stimulation in the nicu, as well as individualized breastfeeding support tailored to the mother's unique sensory profile, are encouraged. relevance to nidcap breastfeeding rates of premature infants are lower than the who recommendations despite its proven benefits, specifically for this sensitive population. promoting breastfeeding in the nicu is a significant challenge that involves both medical and emotional aspects of the infant, the mother, and their developing relationship. the nidcap approach to care emphasizes the provision of an optimal sensory environment for the developing infant, as well as the support for early mother-infant interactions. increased attentiveness to the mother's sensory experience may be especially important in the context of breastfeeding in the nicu, where mothers might be exposed to unfamiliar, distressing and overloading environmental stimuli. adaptive responses to the mother's sensory needs and environmental adaptation may impact breastfeeding success and as a result increase breastfeeding rates in the nicu and after discharge. breastfeeding-related pain, sensory overresponsivity (sor), and exclusive breastfeeding 6 months after birth: a cohort prospective study doi: 10.14434/do.v16i1.35772freund-azaria a1,2, bart o1, regev r3 and bar-shalita t1 1occupational therapy department, school of health professions, faculty of medicine tel-aviv university, ramat aviv, tel aviv, israel. 2department of neonatology, meir medical center, kfar-saba, israel. 3clalit health organization and neonatal follow-up clinic, meir medical center, kfar-saba, israel. 2022 • developmental observer • 9 world nidcap day 20 22 jennifer degl, ms family representative nfi board member doi: 10.14434/do.v15i2.34369 happy 20th anniversary to the nfi! we sure know how to celebrate as can be seen by the multitude of events hosted by our members throughout the month of march in concert with our 3rd annual world nidcap day. march 20th was exceptional this year. so many of our members celebrated world nidcap day in their hospitals with activities, parties and some even made specially designed nidcap themed cookies. several bridges and buildings across the globe were glowing in teal to help us spread awareness about the nidcap practice so that we can continue to share it with more hospitals, babies, and families. one event that we are especially proud of is our first ever world nidcap day virtual gala. it was no small feat to pull off such an event. many members of the nfi advancement committee and others worked tirelessly to plan each portion of the gala. one member of the gala planning team that deserves special recognition is sandra kosta. sandra seemed to work around the clock to make sure the event went off without a hitch and it worked. there were many presentations from several nfi members from all over the globe. the compelling stories from africa and japan conveyed the true meaning of nidcap while reminding us all that the nidcap practice is truly a global one. our family presentation was also quite beautiful. latoshia rouse’s family story was a true gem. hearing her story while seeing her beautiful children play in the background shows us how important the nidcap practice is and the impact it makes on babies and families. our gala was full of prizes as well. attendees were invited to bid on several different gift packages, including books authored by our members, developmental care tools such as the zaky, and oneon-one conversations with our nidcap experts including, drs. heidelise als, jane holmes bernstein, nikk conneman, and graciela basso. the lucky winners have been notified. let’s not forget to mention the inauguration of the newly opened lundmalmö nidcap training and research center in sweden that occurred during the swedish conference on ultra-early intervention. this event was march 24, 2022, and many of our own nfi members gave presentations including dr. heidelise als, dr. deborah buehler, and more. we are so happy to have yet another training center open. thank you to each and every one of you who attended an event or shared it with your colleagues, donated your hardearned money, celebrated in your hospital, or just wore teal to help us spread the word about nidcap during the month of march. we are thankful for you! is it too early to start world nidcap day 2023? mid-hudson bridge, new york lit up in teal “the compelling stories from africa and japan conveyed the true meaning of nidcap while reminding us all that the nidcap practice is truly a global one.” 2024 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aims the state subsystem is difficult to understand as a nidcap professional-in-training. nidcap professionals-in-training are expected to reliably recognize the six brazelton states1, and the division of each state into the diffuse (a) or robust (b) subcategory.2,3 the aa state is a unique feature of nidcap naturalistic observation, recognized as a respiratory pause greater than eight seconds and defined in the nidcap training manual as ‘removal from the state continuum’.3 this definition seems to contradict prechtl’s definition of the state as a “discrete mode of neurological activity, during which a group of physiologic and behavioural characteristics that regularly recur together”.4 this implies that the six states are discrete; whereas the aa state definition postulates a state continuum. the complexity of states increases when referring to the apib manual, where states 1aa and 2aa are mentioned as “states in which severe diffuseness is embedded”.5 the confusion about states, particularly the aa state, is a frequent topic of uncertainty at nidcap training days at our nidcap training centre. a lively discussion usually follows but without a conclusion. to gain a deeper understanding of, and to clarify uncertainties about infant state, a survey was sent to nidcap trainers. trainers were asked for their interpretation of the states seen on a short video, and for their understanding of states 1aa and 2aa. methods a six-minute video from a training observation was sent to nidcap trainers, with a google distribution listserv survey. trainers were asked to view the video, and then answer questions about states and transitions, and whether the two-minute intervals used in a nidcap observation accurately captured details of the infant’s state profile. trainers were also asked if the infant moved into state 2aa, and how they explained states 1aa and 2aa to nidcap professionals-in-training. results/findings three responses have been received to date. a) the number of state transitions identified during the video was either 7 or 15 (one respondent did not reply). b) transitions between states: the number of respondents who identified any state(s) during each two-minute time interval is shown below. multiple states could be chosen for each interval: c) all respondents felt that details of the state profile were not captured by simple recording in the table above. d) in response to “when baby stops breathing and becomes flaccid, is he moving into state aa or 2a?’, two replied ‘aa; one did not commit. e) in response to “how do you explain the states 1aa and 2aa to your trainees,” the trainers were not sure; “very good question, not sure myself!”. limitations only three responses have been received to date. the link to the survey and video will remain live at https://forms.gle/ fnnmemstpy258jev5. responses received between the submission of this abstract (30 june) and 31 august 2023 are presented. the quality of the video (e.g. movement artifact) was challenging for some respondents. relevance to nidcap understanding states is critical for reliability as a nidcap professional. caregivers also ideally synchronise interactions to infants’ states and need some appreciation of this concept. our questions and the input from trainers highlight the complexity of ‘state’. we hope to begin a dialogue with the nidcap community toward enhanced understanding of states, that will lead to improved care and outcomes for newborns in hospitals. conclusion states and state transitions are complex and confusing to states and state transitions – dilemmas for dialogue doi 10.14434/do.v17i1.37040 burhani ha1,2,3, el-tawil a1,3, tyebkhan jm1,2,3 1department of pediatrics, university of alberta; 2division of neonatology, stollery children’s hospital; 3edmonton nidcap training centre canada, edmonton, ab, canada table 1 state/ time interval 0 to 2 minutes 2 to 4 minutes 4 to 6 minutes 1a 2a 1 2 2 3a 2 2 2 4a 5a 1 2 6a aa 1 2 https://forms.gle/fnnmemstpy258jev5 https://forms.gle/fnnmemstpy258jev5 2024 • developmental observer • 17 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background skin-to-skin care (ssc) reduces morbidity and mortality in preterm newborns (pn) and is an important part of developmental care. however, extremely preterm infants are generally ineligible for early, prolonged ssc because of the need for increased humidity, and visibility, which is currently available only in incubators. to address these issues and enable continuous ssc in this population we invented the skincubator – a novel, wearable, bottomless incubator (figure 1). the skincubator creates an enclosed environment with all the advantages of a neonatal incubator (humidity, temperature regulation, and good visibility) on the parent's torso. enabling early prolonged ssc for very preterm newborns. aims to evaluate the feasibility, safety, and thermal management of ssc in the skincubator versus traditional ssc. methods a safety trial comparing thermal stability during traditional-ssc (tssc) sessions, and skincubator sessions was conducted. population: step 1: five pn, ga 29-34 weeks from day of life (dol) four with no respiratory support. step 2: five pn, 26-33 weeks from dol 4. step 3: fifteen pn, ga 26-33 weeks from birth or 24-28 from dol 4. temperature stability, humidity levels, and parental feedback were assessed during both types of ssc sessions. results eighteen preterm newborns were enrolled in steps 1-3. in steps 2-3 we compared 35 paired sessions of skincubator and t-scc performed on 12 babies. (one baby– treated in the skincubator in delivery room, was excluded from session analysis because parents did not participate in the study in the nicu). demographics of included pn were (average (range): ga 29 (26-32); weight 1288 gram (660-1590) dol 5.2 (1-11). no safety issues occurred during skincubator care. skincubator humidity was >70%, 95% of the time. parents appreciated the skincubator as safe and comfortable. the average time out the skincubator: a novel device for early prolonged skin-to-skin care for very and extreme preterm neonates nitzan i, bin nun a, hammerman c, kagan t, metrikin-gold a shaare zedek medical center, jerusalem, israel doi 10.14434/do.v17i1.37076 figure 1. a 660-gram preterm baby in the skincubator, in skin-to-skin contact with his father, with 85% environmental humidity. figure 2. the updated model of the skincubator that we are developing following learning and feedback from the parents and staff who participated in the trial. it includes: an opening for parents to see, smell, and talk with the infant; easy access for staff from multiple points; and allows most nursing and clinical procedures while in ssc. it has disposable covering to reduce contamination risk, dedicated anchors for all lines and tubes, and safe anchoring of the baby on the caregiver's chest. after adjusting for confounding variables such as gestational age at birth, being sga, and severity of illness, being born in period 1 remained associated with a lower change in weight z-score from birth to discharge (b-coefficient 0.283 ic 95% 0.318-0.866; p <0.0001) relevance to nidcap moving to single rooms resulted in better environmental profile scores. also, the weight gain of the babies was higher in the new nicu. we hypothesize that this could be because the environment was better than previously, and favored families' privacy. conclusion preterm infants were found to have better growth during admission after the architectural change, despite a higher prevalence of sga infants and a lower gestational age in this period. due to the retrospective design of the study, we cannot rule out that other factors could have influenced our results. references als h, buehler d, gilkerson l, smith k. profile of the nursery environment and of care components template manual part 1. nidcap training manual. nidcap federation international, 2015. figure 1 figure 2 18 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 currently, some kind of developmental care is to be found in most neonatal intensive care units (nicu), and the presence and participation of the parents are considered fundamental by neonatologists worldwide. the history of developmental care has rarely been studied. bibliometrics as a quantitative method is not only useful for research assessment purposes, but also for analyzing the history of science. reference publication year spectroscopy (rpys) was proposed to objectively analyze the roots of a research field.1 rpys has been used for example for neonatal pain.2 aim we investigated the historical origins of developmental care in newborn infants using rpys to reveal the most important publications for the evolution of this research field and to evaluate their relative importance within the field. methods a web of science search query combining infantand intervention-related synonyms was performed on february 2, 2022. the search retrieved 5,633 papers containing 7,248 distinct cited references. rpys analysis was performed on this dataset to identify the most referenced historical publications for developmental care in newborn infants. median deviation analysis identified peak publication years including the most cited historical references. landmark papers were defined as those belonging to the top 10% of the most frequently referenced publications for longer than 20 years. results the rpys peaks showed an early phase (1936-1986), during which infant development was studied and analyzed, leading to a conceptualization of developmental care for newborn infants. the following years (1986-2015) showed an explosion of interest in developmental care, highlighting two main programs: the newborn individualized developmental care and assessment program (nidcap) and the infant health and development program (ihdp) with many publications during those years striving to demonstrate the evidence of their clinical benefits. relevance to nidcap a major turning point was the conceptualization of the synactive theory of development by h. als in 1982. nidcap (and the ihdp) provided the basis of the broad concept of infant and family-centered developmental care, implemented at various levels in most nicus since the turn of the century. conclusion developmental care has become increasingly important through the implementation of two programs: nidcap and ihdp. published 2024, acta paediatricia https.//doi.org/10.1111/apa.16996 references 1. marx w, bornmann l, barth a, leydesdorff l (2014). detecting the historical roots of research fields by reference publication year spectroscopy (rpys). j assoc inf sci technol 65(4):751-764. doi:10.1002/asi.23089 2. anand kjs, roué jm, rovnaghi cr, marx w, bornmann l (2020). historical roots of pain management in infants: a bibliometric analysis using reference publication year spectroscopy. paediatr neonatal pain 2(2): 22-32. doi: 10.1002/pne2.12035. historical roots of developmental care in newborn infants: a bibliometric analysis using reference publication year spectroscopy smith m1, marx w2, anand ks3, haunschild r2, sizun j4, roué jm1 1 university hospital, brest, france, 2 max planck institute for solid state research, stuttgart, germany, 3 department of pediatrics, stanford university school of medicine, usa, 4 university hospital, toulouse, france doi 10.14434/do.v17i1.37077 of the axillary temperature target (36.5º 37.5º) was 7.4±13.5 and 19.7±27.8 min during skincubator and t-ssc respectively (p=0.002). initial temperature drop during skincubator care was smaller than in t-ssc (0.2º±0.1 vs 0.5º±0.3 p<0.001 n=35). six babies had picc lines or umbilical venous catheters, and one received phototherapy during skincubator care. no line dislodgment occurred. no baby had moderate hypothermia during skincubator care. five babies experienced moderate hypothermia of 35.5-35.9 during 6 t-ssc sessions. relevance to nidcap the skincubator may promote early ssc for very and extreme preterm newborns, aligning with the principles of nidcap by providing individualized, developmentally supportive care in the nicu. conclusions the skincubator can effectively create a humidified and warm environment on the human body for pn. the skincubator seems to be safe and may be superior to t-ssc in maintaining pn temperature, this may be clinically significant for extreme pn. further research is needed to validate these promising results and assess the long-term benefits of the skincubator in improving outcomes for premature neonates. 12 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 introduction the protective effects of kangaroo mother care (kc) on the neurodevelopment of preterm infants are well established, but we do not know whether the kc is safe on infants under 28 weeks gestational in the first days of life. aims to describe safety in early kc on preterm infants under 28 postmenstrual weeks. methods this study is part of a primary randomized parallel clinical trial conducted to evaluate the equivalence or non-inferiority of lateral kangaroo care posture versus prone conventional posture. (cangulat study. trial registration at clinicaltrials.gov: nct03990116) rct was conducted at the neonatal intensive care unit (nicu) of the 12 de octubre university hospital (madrid, spain), from may 2019 to november 2021. a total of 105 infants < 28 ga (gestational age) at birth were assessed for eligibility; 35 of them were excluded and 70 were enrolled. during their first five days of life, all kc sessions were monitored. all infants in kc were covered by polyethylene bags to keep humidity and decrease hypothermia risk while keeping maximal skin-to-skin contact. ethics considerations the clinical research ethics committee of the hospital 12 de octubre approved the study (no. ceim 19/206). informed consent was obtained from the parents of all subjects involved in the study. results during the study, 285 sessions of kc were taken throughout the first five days of life. the main results are shown in table 1. of the 285 sessions studied, 78% took place in a single room (sr) and 22% in an open bay room (ob). an umbilical catheter was present in 60% of the sessions (168/285) and peripherally inserted central catheter in 58% (165/285). in 5.6% (16/285) of the sessions, infants were intubated and 94.4% were assisted on duopap/cpap. two of the sessions lasted only 60 minutes due to infant temperatures < 36.5ºc and an accidental extubation occurred. in 80% (228/285) transference was performed by a health professional, and in 20% (57/285) by the parents. ultrasound follow-up detected 8.5% (6/70) of ivh i and 4.3% (3/70) of ivh ii. activity in the room during the kangaroo sessions was measured using the profile of the nursery environment and of care components template score sheet1. when children were in the sr the activity was calmer and quieter (>4-5) than ob (66% vs. 90.3% p< 0.005). as light and noise were softer (6.8 lux vs 3.7 lux p<0.005) and (62 db vs 58 db p<0.005). relevance to nidcap as professionals working in neonatal units, we should have as much knowledge as possible about kc and be able to make parents as autonomous as possible in the kc. conclusion our findings suggest that extremely preterm infants keep normothermia during kangaroo care in their first days of life. is early kangaroo care safe in preterm infants under 28 weeks gestation? lópez maestro m, collados l, jimenez l, serrrano a, melchor p, martinez p 12 de octubre hospital madrid spain doi 10.14434/do.v17i1.37045 table 1 n=70 media ds minmax ga (wk) 26.2 1.2 24-27.8 weigt (g) 859 ± 63 196 510-1460 apgar 5 min < 4 7 (10%) 2.3 2-10 days of admissión 52.17 24 3-141 sex (male) 46 (65,7%) csection 39 (55,7%) 8.2 hours of life of the 1st kc 38.1 8-99 duration of kc sessions (min) 130 56 50 – 365 oxygen saturation 95% 3.4 oxygen supplementation % 25.4 8.5 heart rate 153 12 tª 60 min after beginning kc 36.7 ºc 0.4 infants with apnea during the first kc session, % (n) 30% (21/70) 2024 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 introduction newborns are exposed to many painful procedures in neonatal intensive care units (nicus). neonatal pain has been recognized in the eighties and many scales have been developed to assess and manage pain. despite this, pain management in nicus is often suboptimal and remains challenging. over the last decades, parents have become more and more involved in the care of their babies. aims the primary aim of this study is to compare the edin pain scale assessed by parents with the assessment made by caregivers. this is to determine if parents could be reliable resources to optimize pain management in ill newborns. the secondary aim of the study is to evaluate the swedish alps-neo scale compared to the edin pain scale as a potential and more appropriate tool for assessing stress and pain in newborns. methods a prospective study was conducted in the nicu of saint-pierre university hospital in brussels, belgium. the study compared the edin pain scale assessed by parents to the one assessed by caregivers. from january 1st to may 31st, 2022, informed consent was obtained for fourteen newborns. parents of these newborns who were enrolled in the study were trained (one hour) in assessing the edin scale by an experimented caregiver. both parents and caregivers assessed the edin pain scale. edin scores of parents and caregivers were compared. caregivers also assessed the alps-neo pain scale for each edin score. results the results showed that the edin scores assessed by parents were significantly higher in absolute value compared to the scores assessed by the caregivers. however, there was an agreement between parents and caregivers in identifying positive pain scores (edin≥ 5) in 77.8% of the cases. parental pain assessments were particularly amplified during painful procedures. parent’s pain assessment is more constant during the day while caregivers assess pain mostly during the morning. the alps-neo pain scale was found to be more efficient, precise, and supportive of nonpharmacological pain management compared to the edin scale. a larger study in the unit is currently underway to confirm these findings. relevance to nidcap the study highlights that parents’ assessment of the edin pain scale is as reliable as those of caregivers. furthermore, parents consistently evaluate pain throughout the day, indicating that their involvement can contribute to more optimal pain management. this underscores the importance of a family-centred approach in nicus. conclusion to improve pain management in the nicu, parents should receive training in assessing pain and stress and become active collaborators in the assessment process. alps-neo is suggested as a validated, user-friendly pain scale that could be more suitable for use by parents compared to the edin scale. alpsneo promotes nonpharmacological pain management and may offer a more appropriate tool for parents to assess their newborns’ pain. time for change: let parents assess neonatal pain in the nicu kottos e, druart d, van herreweghe i nicu, saint-pierre university hospital, brussels, belgium doi 10.14434/do.v17i1.37044 and there are no risks concerning devices such as umbilical catheters and endotracheal tubes, ivh is not increased, as all ivh cases were grade 1 or 2. if kc takes place in a single room, a calmer environment and a more appropriate noise and light level surround children. references als h, buehler d, gilkerson l, smith k. profile of the nursery environment and of care components template manual part 1. nidcap training manual. nidcap federation international, 2015. the editorial team of the developmental observer is looking for nfi members who may be interested in becoming a reviewer for the do. if interested please send an email and a copy of your cv to the senior editor at developmentalobserver@nidcap.org 2020 vol. 13 no. 2 nidcap federation international (nfi) founded in 2001, the nfi is an international, non-profit membership organization. the nfi encourages highly attuned implementation of the newborn individualized developmental care and assessment program (nidcap) for all intensive, special care and newborn nurseries around the world. the nfi serves as the authoritative leader for research, development, and dissemination of nidcap, and for the certification of trainers, healthcare professionals, and nurseries in the nidcap approach. developmental observer the official newsletter of the nidcap® federation international “rejoice with your family in the beautiful land of life.” albert einstein table of contents the strength of nfi's collective experience ................................................ 1 editorial ...................................................... 2 putting beauty at the heart of the healing process ....................................... 3 family voices ............................................. 5 reflections on infant feeding ................. 8 global perspective of developmental care – cyprus ......................................... 10 my nidcap journey as an interpreter ............................................... 12 nidcap training centers around the world ........................................................ 16 the science desk .................................... 18 publications ............................................. 21 poet's corner ........................................... 25 nidcap on the web ................................ 27 issn: 2689-2650 (online) do 13:2 full issue doi: 10.14434/do.v13i2.31223 u se d w ith p er m is si on the strength of the nfi’s collective experience deborah buehler, phd president, nidcap federation international doi: 10.14434/do.v13i2.31301 one of my very early experiences as a nidcap trainer took me to falun, sweden. while i was there, i shared nidcap’s introductory lecture and guided a few introductory bedside observations. with that visit, the healthcare team learned about nidcap and a new group of nidcap trainees was launched. what i remember most about that trip was how much i learned. my understandings of what was and what could be possible within hospital care was completely expanded by the people i met and the care i observed. during one particular nidcap observation, i vividly remember a mother and her baby and the nurse caring for them. they were so beautifully attuned with one another that i was mesmerized. over the several days i visited the nursery, i learned that aspects of medical and nursing care could be done in different ways than i had seen practiced in u.s. hospitals. during the breaks of my lecture, i remember a physical therapist leading the whole audience, of physicians, nurses and therapists, through joyful stretching breaks with children’s songs, which included the itsy-bitsy spider. it was evident these small, yet powerful moments of silliness were remarkable for the respect and cohesiveness of the whole healthcare team. i especially remember this nidcap training session, nearly 30 years ago, in part, because it was my first solo international trip which posed challenges on many levels for me. perhaps being stretched in new ways created opportunities to be open to seeing and being shaped by my experiences. this moment in time captured my imagination and continues to inform my nidcap training and mentoring of trainees and health care professionals and their resolve to evolve their care to be ever more supportive. deborah buehler, phd continued on page 2 collaboration and support for and from each infant's family is the core of nidcap. nidcap care in the moment family strength 2 • 2020 • developmental observer 2020 is continually described as unprecedented (our world has never faced this scale of international pandemic before) and as creating a new normal (life is very quickly changing as we adapt around the world). everything appears to be affected. this most certainly includes access to and the experience of hospitalizations and healthcare. within newborn and infant intensive and special care nurseries, parents are being separated from their newborns and young infants because of hospital infection precautions. healthcare professionals are tasked with providing medical care in the face of tremendous barriers, workloads and sacrifices. how do healthcare professionals, and the families they serve, understand and navigate all of this extraordinary adversity? one key to these understandings may be hearing and reflecting on the stories, the struggles and the triumphs, of everyone who is part of these systems of care. brené brown, phd, lmsw, a research professor, wrote “maybe stories are just data with a soul.” families’ and professionals’ lived experiences, including ones of pain and suffering, may provide insight, inspiration and direction for healthcare’s next steps. much has been written on how hardship impacts individuals. for instance, kaufman and gregoire (2015) stated that “experiences of extreme adversity show us our own strength.” (p.146) beyond survival, these authors optimistically described how individuals may also thrive with adversity. this capacity for resilience is a profound strength that offers stability and growth for individuals as well as for healthcare systems. this unprecedented year is also creating challenges and a new normal for the nfi and nidcap efforts. nidcap training centers and their trainers are faced with how to educate and guide trainees and hospitals with in-person and travel restrictions. this comes at a time when individual and system-wide support is needed more than ever. how will the nfi navigate the short and long-term challenges ahead? to thrive as an organization in this rapidly changing world, the nfi must respond to the incredible realities faced by nidcap trainers around the world. examining difficulties, strengths and opportunities are crucial at this time. drawing on the remarkable skill, passion and experience within our community, we must listen, question, discuss, reflect, learn and create with one another. innovations for training, education and support may emerge as the nfi’s members, its nidcap trainers and supporters, continue to share their own experiences and perspectives with one another. our global nfi community offers tremendous strength and wisdom to draw upon for stability and direction. support for and from one another may lead to inspiration of creative possibilities to build future directions. the nfi, and its members, have a tremendous opportunity to rise up to meet this extremely difficult moment in time. how 2020 captures our collective hearts and imaginations and informs our next steps will ensure that the nfi and nidcap’s capacities and reach thrive for years to come for newborns and infants and their families. reference: kaufman, s. b. & gregoire, c. (2015). wired to create: unraveling the mysteries of the creative mind. new york, ny: perigee books. welcome to the second issue for 2020. what a year it has been so far. there have been many challenges for the nidcap community. resilience is a prime focus at the moment. this issue has a theme of reflection from our global community. there are a variety of interesting perspectives. michiko doi reflects on her journey as a nidcap translator in japan, giving us a unique glimpse into her world. bronagh mcalinden from australia reflects on her observations of two newborn feeding episodes showing the importance of close observation. ita litmanovitz joins us from the science desk reflecting on the effects of covid-19 through her examination of stress on the developing brain, and in our new poet’s corner, julia giesen, nidcap professional, reflects on her nidcap training through her poetry. in our family voices column we hear a father's journey through the nicu with his twin daughters. these manuscripts show the power of reflection, not only as a learning strategy but as a way of enriching the experience of the journey. we journey to barcelona, spain to hear about the work of the nidcap training centers and we travel to cyprus in the mediterranean to learn about developmental care initiatives. the rimini team share their beautiful story of their using beauty to minimise stress in the nicu. deborah buehler, president of nfi shares her essay on what she sees as the strength of the nfi collective during these challenging times. the global spread of nidcap is evident with contributions from japan, australia, canada, israel, italy, spain, cyprus and usa. we are certainly a global community. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia doi: 10.14434/dov13i2.31064 kaye spence, am greetings from the editor 20 • 2024 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e danish nidcap training and development center, aarhus the danish nidcap training and development center, aarhus, was established in 2015 as the first nidcap center in denmark. the center is located in the central region of denmark, hosted by child and adolescent medicine, aarhus university hospital in affiliation with the neonatal intensive care unit. our journey towards implementation of developmental supportive care, in our level 3 neonatal intensive care unit (nicu) at aarhus university hospital, started in 2005 with nidcap training by senior nidcap master trainer agneta kleberg followed by lectures and bedside education of staff by eva jørgensen. in 2006, hanne aagaard, and eva jørgensen were certified as nidcap professionals. in addition to continued implementation and education in our unit and in denmark, we founded a national nidcap network in 2006, together with nidcap professionals in denmark, to share experiences and to support each other implementing nidcap. in 2009, hanne aagaard received her ph.d. degree from aarhus university with the title: preterm mothers experiences, self-esteem and support. in the establishment of the training center in aarhus, we were supported by senior nidcap master trainer agneta kleberg and apib master trainer deborah buehler and in 2015, eva jørgensen was certified as a nidcap trainer. hanne is now professor in neonatal nursing at lovisenberg diaconale university college, norway. in our nidcap training center, the primary objective is to encourage the implementation of developmental supportive care for the growth and well-being of newborn infants and their families. our vision is to support and empower families, and support the multidisciplinary team overall in achieving this goal. our approach involves initiating newborn individualized developmental care and assessment program (nidcap) education and family infant neurodevelopment education (fine) within our own nicu, the pediatric units caring for newborns without the need for intensive care, the maternity unit, and the labour ward (midwives). we disseminate this educational outreach to local hospitals by theory and protocols for handling both elective procedures and urgent interventions in newborn care. on a global scale, eva jørgensen, our center’s nidcap tenna gladbo salmonsen, rn, mscn, nidcap professional, co-director, and eva jørgensen, rn, nidcap trainer. map of denmark showing the central region highlighted in rust color. doi:10.14434/dov17i2.38131 2024 • developmental observer • 21 trainer, contributes to the development of standard of care plans for the european foundation for the care of newborn infants (efcni). we offer fine level 1 training to all newly hired nurses as a part of the introduction program, and they are in the following months supported by structured nidcap bedside guidance with an increased focus on the autonomic system, feeding and attention to the infant’s behavior. this is a part of the overall implementation strategy. our goal is for all nurses and doctors to complete fine level 2 training, we are on our way – although it will be an ongoing process. fine 2 is important to support the overall level of developmentally supportive care. it gives a broader understanding of al’s synactive model of infant development and a more consistent language among health-professionals across all levels of experience. furthermore, and very importantly, it strengthens the communication with parents. a fine 2 certified nurse says: “the experience of a professional quality improvement and thus a significant professional satisfaction has contributed to a great personal fulfillment." further she says, "the fine 2 educational program has also contributed to enhancing the dialogue with parents." a doctor says. "observing the infant and families from the bedside during medical procedures, feels like having just been given eyes and ears for the first time in our own unit! what you see cannot be unseen." our team is growing. the team at the danish nidcap training and development center, aarhus and our nicu at aarhus university hospital has great support from our multidisciplinary leadership. we are currently four nidcap professionals and further three are in training. we are proud of having a family-representative, who also has had a strong connection to the national parent organization, as a member of the steering group for the nidcap training center. it expanded our perspectives, when talking about collaboration with parents. collaboration in close collaboration with the newly established danish nidcap training and development center, copenhagen, we have developed a non-pharmacological standard operational procedure for a study. the key focus is a structured observation of the infant’s comfort and provision of supportive care before, during and after a procedure. we aim to implement the protocol for any medical procedure in the nicu and all clinical research, that involves manipulation or interventions at the patient level. a dedicated nurse is responsible for environmental preparation, supportive positioning, observation of the infant's communication signs, and pacing the task accordingly to ensure minimal challenge, discomfort, and a pain-free procedure for the infant. collaborating with parents, the nurse prepares the infant through environmental modifications such as adjusting light and noise, maintaining warmth, and providing supportive bedding. continuous communication between the nurse and other team members provides an environment to support the infant during the procedure. more research to come. while increasing the critical number of nidcap and fine certified staff, we have also fertilized the ground for creating new knowledge. we plan to compare the need for pharmacological intervention on the comfort of the infant and parents during and after predefined procedures using the standard operating comfort procedure described previously, with no standardization procedure. patient-centered learning the support of the infant starts with understanding how we as nidcap professionals, can provide an environment and comfort for the baby. in addition, to empower families to become involved in their infant’s daily care and feeding, and to support part of the aahus nidcap team 22 • 2024 • developmental observer them during medical examinations and procedures. nidcap professionals work clinically at the cot side with parents and other health professionals, showing them their observations, reflections and supporting them to see clearly the behaviors of the baby. this enables the family and healthcare professionals to gain knowledge and skills and apply this to the care of the infant. bedside observations provide insights into the infant’s response and needs. this hands-on learning approach is crucial for developing a thorough understanding of developmental supportive care in our unit. it improves communication skills, decision making in care, and collaboration with parents, and promotes multidisciplinary teamwork in support of the infant’s development. this statement by a nurse supports our work. "through increased awareness and understanding of the nidcap approach, i have been able to optimize and structure the environment, enabling me to effectively support each child with individually tailored care and nurturing. the enhanced skills have resulted in an experience of being able to fulfill my core responsibilities in a much more qualified manner." the team at danish nidcap training and development center, aarhus: nidcap trainer: eva jørgensen, rn training center director: tine brink henriksen, md, professor, consultant chair, phd training center co-director: tenna gladbo salmonsen, rn, mscn, nidcap professional. contact: eva jørgensen; nidcaptrainer@gmail.com tenna gladbo; tennsalm@rm.dk danish nidcap training and development center, copenhagen the neonatal intensive care unit (nicu) in copenhagen was the first nicu in denmark. it is also the largest nicu and the only level 4 unit in the country. our nidcap journey in copenhagen began in late 1990 when nurse specialist janne weis and nurse dorthe mai were introduced to nidcap. before then we had a developmental and family centered care group of dedicated staff who worked with family focused care, minimal touch, and early discharge. dorthe mai was a leader in implementing hospital-assisted home care after early discharge in denmark. the first family in denmark to use early discharge was in 1997 provided by dorthe mai and the home care team from our unit. in the year 2000, janne weis and dorte mai became nidcap professionals with agneta kleberg as their nidcap trainer and mentor. a new friendship and lifelong partnership were established with agneta kleberg. her dedication and contribution as a person and as a professional have had a very positive and important impact of the strategy, vision, and goals for our nicu and nidcap journey. in 2005, we went from an open bay unit to two family rooms with one parent bed next to the infant. it was a significant step towards more family centered care and strengthened the partnership between the healthcare professionals and the family. this move facilitated the families to be actively involved in the care for their infants, enabled shared decision-making and more individualized care plans for the infant and the family. over the years the nidcap team expanded janny hoegh and jannie haaber, two nurses who became nidcap professionals. janne weis completed her ph.d on family focused and guided conversations using a semi structured conversation form with a focus on partnership. this represented a huge milestone in the unit’s journey towards enhancing family centered care in practice. nidcap certificated unit becoming a nidcap certified unit in 2015 was undoubtedly a significant achievement and a testament to the unit’s commitment to provide high-quality individualized developmental care for infants and families. the accomplishment was a culmination of years of dedication, hard work and support and engagement from the leadership. without leadership support it wouldn’t have been possible. the nidcap nursery program with its 121 points is a comprehensive evaluation framework that provided a structured approach for identifying areas of improvement and setting of new goals for enhancing care for infants and families. it enabled us to recognize the units existing strengths. celebration of our achievements, both big and small, is very important for boosting the morale, enhancing teamwork, and maintaining motivation for providing high quality care. we continue to celebrate in our daily work. in 2020, the unit was re-certified in the nidcap nursery program. re-certification is a lifelong commitment and an ongoing evaluation and reflection of how we take care of infants, families, and each other. now and in the future. the nidcap jannie haaber rn, intensive care nurse, nidcap trainer and director of the nidcap training center and porntiva poorisrisak phd, consultant neonatologist, apib professional, co-director of the nidcap training center doi:10.14434/dov17i2.38132 6 • 2023 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e italian modena nidcap training centre the nicu of modena has based its care on the family-centred principles for years thanks to prof. ferrari fabrizio, who guided the nicu for over 40 years. he met heidelise als and berry brazelton in boston; he worked with them, and he learned the importance of the individualized assessment and the behavioral observation of preterm and full-term infants to identify their strengths, vulnerabilities, and developmental goals and to individualize the nicu care to the infant’s needs. at the beginning of 2000, the nicu of modena started its education and training in the nidcap method for nurses and medical staff to offer individualized care which meets the unique neurodevelopmental needs of infants and parents from admission to discharge. the physiotherapist (natascia bertoncelli) flew to london to start her nidcap training with agneta kleberg. in 2005, she became the first nidcap professional in the unit, and in 2013 she became the first nidcap trainer in italy thanks to the invaluable support and experience of agneta kleberg and deborah buehler. during those years, four more nicu professionals (two nurses, one doctor, and one psychologist) became nidcap certified in the nicu of modena. the italian modena nidcap centre was established in 2013, directed by prof. ferrari fabrizio, and is based at azienda ospedaliera universitaria. we celebrated the opening of our centre together with professionals coming from many italian nicus and heidelise als, björn westrup, dominique haumont, monique oude-reimer, sandra lescure, joseph perapoch, inga warren, and silke mader joined us as speakers. now, the training centre medical director is prof. alberto berardi, who is also the head of the neonatal intensive care unit (nicu), and the nidcap trainer is natascia bertoncelli. in 2016, we were honored to host over 100 participants for the annual nidcap trainers meeting in bologna whose organization wouldn’t have been possible without the huge work of many people over the years. nidcap progress in modena continued with the training of additional nidcap professionals. over the last five years, some nidcap professionals left, and others started training and joined the team. now, our nidcap multidisciplinary team includes nine nurses, two doctors, a physiotherapist, and a psychologist. our goal is to offer a unique educational model of family-centred care for preterm and full-term babies and their parents. our nidcap training centre offers education and training to various nicus in italy: genova, florence, siena, and rome. natascia bertoncelli, nidcap trainer heidelise als at the opening of the italian modena nidcap training centre (2013) doi: 10.14434/do.v16i2.36199 2023 • developmental observer • 7 the implementation of nidcap care in our nicu has not always been easy, especially in the last three years of the global lockdown. in addition, the request for nidcap education and training from the italian nicus decreased during the lockdown. despite the restrictive policies, our nicu was successful in not separating infants from their mothers and fathers. parents continued to have 24/7 access to their infant, but only one parent at a time could enter the nicu. skin-to-skin contact was never interrupted during the lockdown period. over the last few months, requests for nidcap education and training came from several nicus in italy. this is very encouraging, and it makes us feel fueled again for new educational experiences. on a national level, we participated in the writing of a document on discharge from the nicu together with the italian study group on developmental care, the italian society of neonatology, and vivere onlus, the national association of parents of preterm infants. the document will soon be published on the website of the italian society of neonatology and it will be available for all nicu professionals in italy. we celebrated world nidcap day together with infants and parents in the nicu and mani di mamma onlus handmade nice little hats for all the babies in the nicu. in the last year, we collected data on parents’ experience of infants admitted to our nicu in modena. parents’ experiences were gathered through guided interviews of their perceptions in a nicu implementing nidcap care. we also investigated the safety of early skin-to-skin contact with infants and parents in our nicu. the findings were rewarding, and they were published in two different articles.1,2 in 2023 we celebrate 10 years since the opening of our center in modena and we are honored to be part of the amazing and supportive community of the global nidcap community. references 1. bedetti l, lugli l, bertoncelli n, spaggiari e, garetti e, lucaccioni l, cipolli f, berardi a. early skin-to-skin contact in preterm infants: is it safe? an italian experience. children (basel). 2023 mar 17;10(3):570. doi: 10.3390/children10030570. 2. bertoncelli n, lugli l, bedetti l, lucaccioni l, bianchini a, boncompagni a, cipolli f, cosimo ac, cuomo g, di giuseppe m, lelli t, muzzi v, paglia m, pezzuti l, sabbioni c, salzone f, sorgente mc, ferrari f, berardi a. parents' experience in an italian nicu implementing nidcap-based care: a qualitative study. children. 2022; 9(12):1917. https://doi.org/10.3390/children9121917 modena nidcap team world nidcap day annual nfi membership meeting wednesday, october 25, 2023 2:30-4:00 pm cdt hyatt lodge 2815 jorie boulevard oak brook, illinois, usa we welcome members to attend in-person or virtually 22 • 2024 • developmental observer behind the scenes: rob catalano the developmental observer relies on many individuals for each issue that goes into production. to launch this feature i would like to introduce rob catalano, the graphic designer for the developmental observer. i put some questions to rob to learn more about the man and his experiences as part of our team. kaye spence (ks). can you tell us a little about yourself? rob catalano (rc). i am a graphic designer and i live with my wife and two sons in lexington massachusetts. i graduated many years ago from the university of massachusetts, amherst with a fine arts degree in sculpture and a minor in graphic design. i’ve had some adventurous jobs over the years (building bicycles, lobster fishing…) but it’s been graphic design that has stayed with me, keeping me grounded. in the past, i have worked for newspapers, magazines and design agencies but have been on my own now, for over 25 years. i do a lot of print design work; newsletters, annual reports and branding, mainly working with adobe indesign, photoshop and illustrator. over the past 5 plus years i have been doing more web design. ks. what would you say is most important to you? rc. what’s most important to me is certainly my family and friends. my wife and i will be celebrating our 30th wedding anniversary this coming year, and our two sons are now both in college. all together we have a large extended family and many friends. i’m grateful for the life i have, and the people in it. ks. what do you like most about being a creative designer? rc. i can’t picture my life not doing creative things. being a graphic designer satisfies my need to be creative while also providing a source of income, which is important. as they say “do what you love, love what you do”. what i enjoy most about work is the collaboration with clients; working on an idea or project that they aren’t quite able to express themselves. collaborating with them and bringing it to fruition, together, gives me great satisfaction. it’s also very gratifying seeing your work out there in the world. ks. how did you first become involved with the developmental observer? rc. it was back in the spring of 2007 and nidcap was looking for someone to come up with a new, professional look for their newsletter. i believe sandra kosta had initially reached out to some friends of mine, but they were too busy to take on new work and referred her to me. i had already been doing work for boston children’s and mass general hospitals at the time. i showed her some ideas for a design and we proceeded to lay out vol. 1 no.1. we’ve been working together since! ks. we are now up to volume 17. what do you see as the changes that have occurred over the years? rc. most of the changes i have seen over the years are to nidcap itself, as an organization. when i started work on the newsletter, i think there were 15 training centers in 5 countries. now there are about 30 training centers in 18 countries. nidcap training and practices seem to have grown from a niche approach to becoming much more mainstream, practiced at hospitals worldwide. all this has been reflected in the writing and contents of the newsletter. it all keeps growing. ks. do you have a favorite article/feature in the do? rc. it’s hard not to feel emotional when you read the family voices pieces. they are written by families who have experienced intense, life changing experiences related to childbirth, with some of those experiences having happy endings, and some not. but they all praise the care and guidance they received from their nidcap teams. those testimonials are strong endorsements of the great work being done. ks. how do you see the do advancing in our technological world? rc. i’ve already witnessed the technological progression of much of the work i do. sandra kosta and i used to go on “press runs” to sign off on the two-color printing of the first editions as they came off the printing press, ink still wet. now the newsletter is distributed digitally and accompanies the website and social media pages. also, every article now has a digital object identifier (doi) so it can be easily found on the web. b e h i n d t h e s c e n e s doi: 10.14434/do.v17i1.37083 (continued on p. 25) 2024 • developmental observer • 25 f a m i l y v o i c e s after completing our nicu journey, my focus shifted toward understanding the impact of leadership on shaping organizational culture. my personal experience as both a patient and a parent of a premature baby deepened my connection with nicu practitioners and heightened my interest in the dynamics of these relationships. long before the crisis of burnout in healthcare providers was as prevalent as it is today, my redefined purpose in life was to deeply care for nicu practitioners. the idea that a nicu parent could provide credible, professional leadership as an equal to physicians, nurses, occupational therapists, and technicians had yet to exist. intuition became my second pillar of leadership. in 2012, i began graduate school with the vision of a nicu parent leader reshaping health systems. though an unsubstantiated notion, my commitment to nicu practitioners, coupled with intuition learned from my nicu nurses, evolved over two years during my career transition. early exploration of the nicu parent leader role led to identifying crucial workforce skills, reinforcing the idea that nicu parents could apply pre-nicu experiences to serve maternal-infant health. i had a notion to empower nicu parents with transferable skills, fostering economic self-sufficiency beyond the nicu. at 14 years old, giovanni is 5’6” and 125 lbs (170 cm and 56.7 kg). he loves caring for others, a reflection of his own evolving recognition of his lived experience. giovanni has an extraordinary sense of humor and aspires to become a youtube star and professional video gamer. he attends an arts academy charter school that cultivates creative thinkers in visual and performing arts with a focus on career and technical education. as a ph.d. candidate in leadership studies at gonzaga university my dissertation explores the credibility of the nicu parent leader. as the founder and principal consultant of courageous steps, i aspire to exemplify profound listening skills cultivated during my nicu journey, offering valuable insights into this shared pain. at the heart of our collective journey through the nicu is the commitment of our nicu provider's practice of listening. nidcap trained staff impact babies and families. it was our nicu nurses' training in nidcap that led to my healing and courageous journey. the nidcap approach to observing and listening to babies and the parent's skills and developmental training extends beyond the nicu. for those of us who accept the invitation to serve as a patient leader and improve the way neonatal care is delivered, we have an incredible opportunity to pay nidcap forward for generations. references 1. burn-out an “occupational phenomenon”: international classification of diseases. (n.d.). retrieved december 7, 2023, from https://www.who.int/news/ item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases 2. coussons-read me. (2013). effects of prenatal stress on pregnancy and human development: mechanisms and pathways. obstetric medicine, 6(2), 52–57. https://doi. org/10.1177/1753495x12473751 3. bolton r. (1987). people skills: how to assert yourself, listen to others and resolve conflicts. simon & schuster. 4. scharmer co. (2018). the essentials of theory u: core principles and applications (first edition). bk, berrett-koehler publishers, inc., a bk business book. 5. aho j. (2010, january 8). early arrivals. herald and news. https://www.heraldandnews. com/top_story/early-arrivals/article_2fab2447-36c6-57a5-ac58-e4e8cd341dae.html giovanni (aged 13 years) and katie in january 2023 it’s easier and faster to reach a greater audience now, and that’s a good thing, but sometimes i miss the tactile experience of seeing and hearing the printing presses running, and holding the finished product. ks. what have you learned about nidcap during your years with the do? rc. everyone i have worked with at nidcap over the years has been wonderful, and they are a very caring group. as we rely more and more on technology, we lose some personal connectiveness and touch. what i have learned about nidcap is the practice of medicine, though rooted in science and technology (i.e. all the technology in a neonatal intensive care unit), can be practiced un-scientifically. after laying out many newsletters filled with many abstracts and research articles, i have no doubt the nidcap teachings are heavily rooted in science, but what i enjoy seeing is the touching/ caring/bonding, the un-scientific things that unite these parents and their children. and they all seem very grateful to have had the experience. ks. thank you, rob, for sharing these insights. i have learned a lot about you and look forward to working with you as the developmental observer continues to grow and to hear more about your creative ideas. (behind the scenes, continued from p. 22) 6 • 2022 • developmental observer f a m i l y v o i c e s m asahiro was born at 22 weeks gestation at the tokyo metropolitan bokutoh hospital and weighed about 400 grams. immediately after his birth, masahiro developed respiratory distress with poor lungs and became seriously ill and needed nitrous oxide gas and respiratory support. masahiro was his parents’ first child, and every day they were with their son, they gently touched masahiro and talked to him affectionately. miwa and teruhisa, masahiro’s mother and father, were able to read masahiro’s behavioral cues so well. during one skin-to-skin care, as masahiro rested on miwa’s chest, she sensed, based on his expression, that his pain and distress had eased. likewise, when teruhisa held him for skin-to-skin, masahiro’s eyes would open, his face would shine, and he appeared delighted with the experience of being close to his father. it was as if masahiro was enjoying the attention. shortly after six months, and masahiro’s half-birthday, it was with great sadness that his parents said goodbye to their son who embarked on an eternal journey in april 2021. following masahiro’s passing, masahiro’s mother, miwa communicated to our staff, “thanks to everyone, we have become a family”. these words provided me with a little relief as everyone who had cared for masahiro was filled with great sadness for his parents. later, we received a letter from masahiro’s family addressed to our hospital staff. i would like to now share the letter masahiro’s family sent us as it provided us with a great deal of courage and energy. to everyone at tokyo metropolitan bokutoh hospital nicu dear doctors and nurses, for medical professionals, i presume that the days will continue to be unrelenting. i am full of respect and gratitude to everyone who is working hard every day in the midst of anxiety and great tension. thank you again. thank you to everyone for taking care of our son masahiro while he was in the newborn intensive care unit. i was able to complete the forty-ninth day of the memorial servicea without delay. it seems that the six months spent in the nicu were short, but i think it is more than enough time for our family. masahiro did his best. the six months my son was alive was in the midst of widespread fear of covid-19 infection. i think there were various difficult decisions in the hospital, such as protecting the bond between parents and children and protecting the safety of everyone involved. under such circumstances, you allowed us to visit our son 24 hours a day, encouraged active skin-to-skin care, and provided care that was close to our hearts until the very end. every day, everyone was thinking and discussing what was the best that could be done at that time. you listened sensitively to the words of our family and worked together to provide care and treatment. and above all, you treated masahiro and our family with love. i’m really grateful. thank you very much. we cherish the growth record with photos that you gave me as well as masahiro’s diary that we wrote together and value. thank you for the many messages you wrote while you were so busy. it is an important treasure for us. losing a loved one is never easy, especially when the loss is a baby. in this story, we hear from the nidcap trainer that worked with a family as they cared for their baby who was born very premature, and the impact of helping the baby’s parents learn how to read their son’s behavioral language and provide him support. following the loss of their son, the baby’s mother sent a letter of gratitude to the staff in the newborn intensive care unit and shared how the individualized and developmentally sensitive care their son received profoundly influenced their experience, they described what nidcap meant to his family and how it changed their perspective of an intensive care setting. the comforting words that this mother provided to the staff in her letter also challenged staff to expand the nidcap work throughout their country so that other babies and families can benefit from this family centered, evidenced based approach to developmental care. nidcap from a parent’s perspective: an open letter from a family column editor: debra paul, otr kanako uchimi, nidcap trainer and author/translator doi: 10.14434/do.v15i2.34361 2022 • developmental observer • 7 f a m i l y v o i c e s without each and every one of you, we wouldn’t have had six months with masahiro. ma-kun. ma-kun ... i still can’t forget how hard he responded to many calls. we laughed and rejoiced together in masahiro’s small changes and growth, and thanks to everyone, our first child-rearing became fun and happy. i can’t heal my sadness and pain, but when i remember your faces, it still makes me feel better! i am really grateful to have met all of you. i can’t forget how you understood the feelings of a newborn premature baby and how to respond to them. in the midst of all the confusion, your voice and actions towards my son served as a model for us, and each word brought us closer to our baby. i was really surprised to find that facilitated tucking and skin-to-skin care also gave masahiro the best experience that we could imagine. putting my hands in the incubator all day and talking to my son, singing a lullaby, and so on. thank you for watching over masahiro with warm eyes. one day, i learned that “nicu is not just a place to treat.” i understood that the nicu is a place to help families learn about their baby’s responses and language as well as their child’s development and on-going care. i remember feeling relieved as until then i thought it was special place to treat baby illness in every way. i was very happy to feel that nurses are not only for treatment, but also for helping us raise our children. i think situations will vary depending on the baby and family, but please continue to be a friendly place that is supportive of the premature baby and family. and we hope that the efforts of nidcap will be taken for granted throughout japan in the future. we look forward to seeing how you continue to you create an ideal environment for babies’ development, care and growth. best regards, miwa june 2021 a this is a japanese custom. the memorial service will be held 49 days (7 weeks) after death. the day of the final decision on whether to go to heaven is 49 days after death. note: the below is the mother’s letter in original format. 【家族コラム原稿案】 まさひろくんは２２週、四百数十グラムで、私たちの病院で生まれました。 彼は生まれた直後から肺の状態が悪く重症でした。noガスと呼吸器のサポートをず っと必要としていました。ご両親にとって初めてのお子さんで、毎日、まさひろく んに手で優しく触れ、優しく語りかけてくれました。そして、ご両親は彼のしぐさ を読み取れるようになりました。 あるときのカンガルーケアでは、ママの胸の上で彼の表情は安らぎました。そして 彼の痛みや苦痛が和らいでいることをママは察知しました。パパのときは目も口も 開けて表情が輝き喜んでいました。それはまるでアトラクションを楽しんでいるか のようでした。 ハーフバースデーを迎えて間もなく、　2021年４月、永遠の旅に出た優裕くんとの 別れは大きな悲しみでした。しかし、優裕くんのお母さんが「皆さんのおかげで私 たちは家族になれました」とおっしゃってくださったことに、大きな悲しみの中で 少しの安堵感を覚えました。後日、私たちの病院スタッフへご家族からお手紙をい ただき、私たちは大きな勇気とエネルギーをもらいました。そのお手紙をご紹介し ます。 墨東病院nicuの皆様へ 拝啓 masahiro’s diary masahiro’s team 8 • 2022 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 　医療関係者の皆様にとっては、まだまだ気の抜けない日々が続くことと推察いた します。 日々、不安と大きな緊張感の中、尽力されている皆様には、心から尊敬と感謝の思 いでいっぱいです。今日もありがとうございます。 　息子、優裕の生前中は大変お世話になりました。四十九日の法要も滞りなく済ま せることができました。 　nicuで過ごした6か月は短いようですが、私たち家族にとっては十分過ぎる時間 であるようにも思います。よく頑張ってくれましたから。 　息子の生きた6か月はまさにコロナの感染への恐怖が広がる中にありました。 院内では親と子の絆を守ること、関わる人すべての安全を守ることと、いろいろ難 しい判断があったと思います。 そんな中で、24時間の面会を許可してくださったり、積極的なカンガルーケアを実 施してくださったり、私たちの心に寄り添ったケアを最後の最後まで行ってくださ いました。 その時できる最大限のことを皆さんが日々考え、話し合ってくださっていたこと。 家族の言葉に敏感に耳を傾け、連携してケアや治療に力を尽くしてくださったこ と。 そして何より、優裕と私たち家族に愛情をもって接してくださっていたこと。 本当に感謝の思いでいっぱいです。ありがとうございました。 皆さんからいただいた写真付きの成長記録や皆さんと書き綴った優裕ダイアリーも そのひとつです。忙しい中、たくさんのメッセージをありがとうございました。大 切な宝物です。 皆さんお一人おひとりなくして、優裕との6か月はありませんでした。 まーくん。まーくん…。 たくさんの呼びかけに、一生懸命こたえる姿が今でも忘れられません。 小さな変化や成長に一緒に笑い、喜び合ってくださり、私たちにとって初めての子 育ては皆さんのおかげで楽しくて幸せなものになりました。 まだまだ悲しみやつらさは癒えませんが、みなさんの顔を思い出すと今でも元気が 出ます！ 皆様との出会い、本当に感謝しています。 早産で生まればかりの赤ちゃんの気持ちをどう汲み取り、どう接したらよいのか。 とまどいの中、皆さんの赤ちゃんに対する声かけや行動は私たちのお手本となり、 言葉の一つひとつが赤ちゃんとの距離を縮めてくれました。 ホールディングやカンガルーケアも、私たちが想像する以上に、赤ちゃんにとって 最高の時間を与えられるということも実感し、本当に驚きました。 保育器に一日中、手を入れて話しかけてはウトウトしたり、子守歌を歌ったり…。 そんな姿も温かい目で見守ってくださり、ありがとうございました。 「ｎｉｃｕは治療する場ではありませんよ」とある日、教わったこと。 ｎｉｃｕは家族とともに赤ちゃんの子育てを手助けする場所なんだ、と理解しまし た。それまでは病気をあらゆる方法で治療する場所で特別なんだと思っていただけ に、気持ちが和らいだことを覚えています。そして、皆さんが一緒に子育てを手助 けして応援してくださっているんだと感じ、とてもうれしかったです。 　状況は赤ちゃんやご家族によっても様々だと思いますが、これからも赤ちゃんや ご家族に寄り添った優しい場所であり続けてください。 　そして、ｎｉｄｃａｐの取り組みも、今後、日本中で当たり前に取り入れられる ことを私たち家族も願っています。赤ちゃんの心のケアと、成長と発達のために理 想的な環境づくりを今後も期待しています。 敬具 2021年6月 優裕の父、母 masahiro with his mother, miwa mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 developmental observer 20 23 | v o l 1 6 | n o . 1 the official publication of the nidcap® federation international the world needs more nidcap, and all clinicians and parents need to learn about it. —yamille jackson (continued on p. 2)10.14434/do.v16i1.35766 inside family voices ................................................ 1 editorial ............................................................ 2 abstracts ......................................................... 6 in translation .............................................. 17 nidcap training centers ................ 19 worldwide global perspective .............................. 22 -new zealand nidcap trainers meeting .............. 25 2023 nidcap on the web ............................ 32 nidcap training centers ............... 34 how it all started when larry and i welcomed our son zachary 12 weeks prematurely in 2001, life changed. it was medically necessary to deliver zachary early, risking his life to save mine, and while i started feeling better, he struggled. to the nicu staff, zachary was one of the 13 million babies born prematurely that year, but to us, he was our world. i owned a consulting firm in risk management engineering for the oil and gas industry. i took an indefinite leave to be with zach all day, every day, in the nicu (a luxury that, unfortunately, few in the usa have). i was a new and imperfect mother that still believed that nobody should suffer alone. i needed to be there for zach to nurture and comfort him and, most importantly, to give him a reason to fight and survive. to this day, my mom has healing and calming superpowers over me, so i figured i had them for zach too. we were fortunate to be in a progressive hospital, and the staff supported my need to care for our baby. our touch turned struggles into possibilities. the nicu staff encouraged me to ask questions. a nurse shared that when they our true story of love, science, and a transformative promise f a m i l y v o i c e s doi: 10.14434/do.v16i1.35784 by yamile jackson, phd, pe, pmp 2 • 2023 • developmental observer grow, former preemies may not like to be touched, and i know isolation is the worst type of punishment. i didn’t want that for zach. humans learn by association, and i wanted to show zachary that pain does not always follow touch. our touch was healing, comforting, and loving. i appreciated it when nurses comforted him verbally before and after painful procedures, as they would with an adult. i appreciated it when they came on their breaks to touch or hold zachary so he felt loved. kangaroo care was introduced the day after he was born as “something nice to do for you and your baby.” i remember when the method started when i was a girl in colombia and heard about it. this started our journey with kangaroo care, and we held zachary daily for hours each day. kangaroo care eased my c-section pain and fulfilled my need to nurture my baby as nothing else did. my sadness and worries went away when i held zachary. nurses did many interventions while i held him (i.e., blood transfusions, evaluations, change of diapers, heel sticks, and anything i could convince them to do while he was calm on my chest). i fell asleep several times, holding him; it was by far the most restoring sleep since his birth. the day everything changed. when zachary was three weeks old, challenges intensified when tropical storm allison flooded houston, texas, and the hospital and life-support equipment lost power we panicked. larry and i managed to arrive at the hospital, and i held zachary skin-to-skin for hours, keeping him warm. larry received a crash course on how to “bag” him and took turns with the staff every 30-45 minutes. in those very dark hours, i promised zachary his pain and struggle to survive were not in vain. he was evacuated. a cable television network, tnt made a movie called “14 hours” about the flood, the evacuation, and zach’s story. like most nicu parents, we felt guilt, worry, uncertainty, lack of control, and sadness, among other feelings. night after night, for five months, we left one of two different hospitals without our baby. my newly found maternal instinct and specialization in ergonomics and human factors engineering helped me be zach’s mom in the nicu. we were part of a team and had a job to do. the nicu staff cared for zach’s physiological needs for survival. we gave him a sense of security by being present, reassuring, and holding him in kangaroo care. zachary, like every human, likely needed to feel loved to find a reason to fight to survive. family voices, continued from p. 1 editorial in the nicu with support (continued on p. 3) the legacy of heidelise als lives on and the breadth of the nidcap work represented in this issue is a testament to the strength of nidcap. abstracts from the 33rd nidcap trainers meeting held in bad boll, germany last october come from nine countries, a truly global effect. profiles from some of the invited presenters and their topics raise so many important issues. kelly janssens shows how being political can benefit the work we do, and karl heinz brisch, who unfortunately was unable to be with us shares his important work on outcomes. gretchen lawhon nicely summarises the meeting in her letter to heidi highlighting so much of the meeting. i am sure heidi would love to be kept informed in this way. regular features of the work of the nidcap training centres is demonstrated by the team at the edmonton training centre in canada. we also learn about how developmental care and nidcap is expanding throughout new zealand. a new feature has been introduced in this issue – in translation. maria maestro lopez has expertly translated an article written by jeff alberts into spanish. we would like your feedback on this approach and suggestions on how we could expand this feature. we would like to reach out to those members from different language backgrounds. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia cover photo used with permission 2023 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board i kissed him after every stick and painful intervention except when i was not allowed. as bad as we thought we had it as parents, he had it worse, so we kept a positive attitude and concentrated on the good news. there were days when we hung on to the fact that he was breathing. “i love zach, but how does he know i love him?” i worried that zachary felt abandoned every night (he didn’t know we were not allowed to stay with him at night or how long we would be away). i worried he wondered why i let people hurt him (he didn’t know they were trying to save his life). i worried that zachary felt rejection or guilt when we did not hold him or touch him when he was hurting and needed us the most (he didn’t know we were not allowed to touch him). as a human being, he was tiny, but he was a human being nonetheless, and he had the right to be treated with love, compassion, and respect. “how do you calm a baby?” calm humans, especially babies, feel less pain, sleep and eat better, leading to fewer interventions, less medication, better healthcare outcomes, less cost, and increased satisfaction. before a painful procedure, nurses tell adults to relax because “when you relax, it will hurt less.” since babies do not respond to verbal instructions, i wanted to find ways to calm zach. nurses and therapists taught me how to use my hands to comfort him, but who would comfort him when we weren’t there? a turning point a pair of filled garden gloves simulated the weight, shape, and containment of our hands the way nurses taught me. larry and i slept with gloves to impregnate our scent so zachary would feel our presence even when we were not there. the nurses could immediately see the calming effect of “the gloves” on the monitors and how they helped zachary. however, they could not see how they helped me. leaving the gloves with our scent made it easier to separate from zach. a part of us always stayed with him. at night i always left the nicu with the gloves positioned where my hands wanted to stay. the staff also used the gloves to position zachary and his equipment and soon noticed he was calmer and sleeping better at night or when we were not holding him. once at home, a nurse called me requesting “the little gloves i made for zachary for the rest of the nicu.” this was 4 • 2023 • developmental observer a turning point…i found a way to give back and solve a need of families and staff in the nicu; however, as a risk engineer, i knew that my homemade and hand-made version had many risks. i could take risks for my baby but not for other babies, so i founded “nurtured by design.” i was in a unique position because i was solving a problem that i lived with, and i had the drive, the education, and the experience to do it. after three and a half years of research and development and the involvement of thousands of stakeholders, we finished our first nicu device, and i called it “the zaky®.” a pair of the zaky hug® extends the touch and scent of the parents and provides a calming and predictable micro-environment for all babies regardless of size, medical condition, or developmental stage. it virtually replaces all developmental care devices and provides a simple and effective tool for nidcap as a non-pharmacologic pain management solution, family-integrated care, and effective for babies experiencing opioid withdrawal and for safe to sleep. i first met dr. heidelise als at the gravens conference in florida when she presented information about nidcap, and it made sense to me. our passion for paying it forward and improving the lives of infants and families in 2007, nurtured by design became my full-time job. i decided to add kangaroo care (kc) to my advocacy work. my research showed two main roadblocks for kc: safety and awareness/education. to provide safety, we spent three years engineering the zaky zak®, starting with my own experience holding zachary – i wanted a device that is safe, hands-free, comfortable, easy to wear, unisex, that provides constant containment and a predictable experience for the staff, the parent, and the baby. it offers easy, quiet, and immediate access for transfers, breastfeeding, pumping, and interventions. the stability provided by the zaky zak® reduces risks, prevents injuries (like unplanned extubations and falls), and, as always, considers the entire supply chain (inventory, ordering, storing, maintenance, training, quality control, etc.) it is also the backup for when incubators lose power and evacuations. in 2010, i was certified as a professional kangaroo caregiver by dr. susan ludington and the united states institute for kangaroo care. soon after, i started the international kangaroo care awareness day on zachary’s 10th birthday (may 15th), which is now celebrated globally. www.kangaroo.care provides free resources and information for a fun, non-threatening, non-judgmental way to celebrate kangaroo care and increase its awareness/education. in 2014, oprah met zach, and she featured our story. the video is on our homepage www.thezaky.com. the gates foundation funded us to develop a mobile app for parents called the zaky® to track kangaroo care and other activities and facilitate kangaroo-a-thons. in 2018, i was honored to sponsor dr. als to present at mary coughlin’s conference in belgium. i saw her again at my first nidcap trainers meeting in october 2019 and met many professionals who told me they love the zaky®, which warmed my heart. what i remember most about dr. als is when she said, “you are one of us,” and she also wrote a letter of support for me for a grant. her life was well lived, and her legacy will continue to be multiplied by phenomenal professionals worldwide that give every baby the best possible chance of life, not just survival. i achieved the trauma informed professional (tip) certification from caring essentials, inc., and realized that the zaky® was aligned with all the elements of trauma-informed care. i also became more active in research, and the list of publications is on our website. our philanthropy includes donating the zaky® products to the most vulnerable. the most recent large donation of the zaky® packages went to every baby in seventeen nicus in ukraine, where parents and babies are experiencing more than usual trauma and are fighting for their survival and their country. we collaborated with the nidcap federation international, other parent organizations, and the march of dimes for logistics and delivery. i also host the “in touch with experts: live,” where we talk in layman’s terms with experts about topics that interest parents. zachary will never remember, but larry and i will never forget. zach is our cio (chief inspirational officer) and grew up to in 2014, zach met oprah winfrey, who featured zach’s story www.kangaroo.care www.thezaky.com 2023 • developmental observer • 5 be a loving, intelligent, witty, handsome, funny, caring, talented, and hard-working adult. he has visited over 20 countries with me, takes fantastic photos, and is gifted and creative. zach is now in college and is passionate about cars. our story was possible because we were part of the nicu community caring for him. i am grateful for the work behind the scenes by researchers like dr. als. i am aware that she and thousands of professionals influenced the nicu staff that cared for zach. globally, we are mourning her loss, but i am confident that nidcap will only strengthen. dr. als was an exceptional woman and teacher, who was inspirational, compassionate, and approachable. those who met dr. als realize what we lost and feel honored to have been touched by her life. dr. als inspired us, taught us, and gave us the knowledge to treat every baby as a human, as someone’s child that is part of a family that deserves compassion, respect, and individualized nurturing care. the world needs more nidcap, and all clinicians and parents need to learn about it. my commitment is to continue supporting your work (on behalf of zach) and offer tools and services that empower you to implement and teach nidcap so that every family can have the best possible quality of life for a lifetime. "zach is our cio (chief inspirational officer)" nidcap federation international board of directors and staff 2022–2023 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: apoorva.sudini@pwc.com charlotte tscherning, md, phd division chief of neonatology, sidra medicine, doha, qatar email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 2 • 2024 • developmental observer the echoes of the 34th annual nidcap trainers meeting are still resonating, marking yet another milestone in our shared journey of promoting developmental care for hospitalized newborns. in this issue of the developmental observer, we are thrilled to bring you the essence of the meeting, capturing the energy and insights that unfolded during this significant event. one of the highlights was deborah buehler's inaugural heidelise als lecture, a powerful discourse on resilience that injects fresh inspiration into our nidcap endeavors. the echoes of her words continue to reverberate, reminding us of the profound impact our collective efforts can have on the lives of the infants we care for. our global community shone brightly as we heard about the groundbreaking work happening across continents. abstract presentations from australia, belgium, canada, colombia, france, germany, iran, israel, qatar, and spain showcased the diversity and richness of our shared commitment. we are confident that the innovative approaches highlighted in these presentations will serve as motivation for your work. gretchen lawhon, in her insightful summary of the meeting, emphasizes the paramount importance of family in our mission. she articulates how the family unit plays a pivotal role in the nidcap journey, underlining the interconnectedness of our work with the broader fabric of familial bonds. through the lens of family voices, katie reginato cascamo shares a deeply personal account of her nidcap experience, demonstrating the transformative power of listening and the profound impact it had on her premature son. her narrative exemplifies the human dimension of our work and reinforces the enduring value of empathy in healthcare. venturing into the international landscape, we explore developmental care in china and xiaojing hu's dedicated efforts to integrate nidcap principles. the global imprint of nidcap is evident, resonating with our shared commitment to realizing the goals set by the nfi for nidcap care worldwide. as the developmental observer embarks on its 17th volume, we are committed to bringing you innovative stories that captivate and inform. in our new "behind the scenes" feature, we introduce rob catalano, a hidden force behind the scenes since the inception of our publication. his story illuminates the collaborative efforts of the many committed individuals who contribute to each issue. your feedback is the lifeblood of our publication, and we eagerly anticipate hearing from you. let us know which features resonate with you and share your ideas for new content. thank you for your unwavering commitment to the nidcap mission. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia erratum. image on page 10 of vol 16, issue 3 should read – ‘joana’ editorial infants, this may be a mismatch between capabilities and capacities and their environments. the center on the developing child at harvard university describes stress as positive, tolerable, or toxic. they write that stress can have a cumulative toll on an individual’s physical and mental health—for a lifetime. the more adverse experiences in childhood, the greater the likelihood of developmental delays and later health problems.4 we know what this looks like from our observational nidcap training. we observe autonomic, motoric, state, attentional, and regulatory stabilities, stresses, and strivings. heidelise frequently quoted winnicott’s writing: babies are liable to the most severe anxieties… if left for too long (hours or minutes) without familiar and human contact; they have experiences which can only be decribed as: going to pieces; falling forever; dying, dying, dying; and losing all vestige of hope for the renewal of contact.5 resilience is not an innate quality. from the womb, fetuses are developing all sorts of competencies. when newborns are born prematurely, they may be described as “fighters” with strong drives to steady, survive and thrive. yet, after attempts to steady and to thrive, they may have experiences of repeated overwhelming instability and they may give up. this is what is referred to in psychology as learned helplessness. if this situation persists it may result in failure to thrive outcomes. reilience develops and is affected by experience. the model of stress apples to individuals of all ages, including parents of infants in intensive care. illness, sleep deprivation, anxiety, fears, struggles, all strain experiences of resilience and well-being and unfolding parenting confidence and competence. professor kristen lee costa wrote: sometimes we just don’t have the skills we need for emotional regulation or stress tolerance. in general, our threshold for coping can vary a lot, cover image by karen anderson doi 10.14434/do.v17i1.37037 a milestone in a shared journey (continued on p.3) 2024 • developmental observer • 3 reflective writing serves as a transformative tool, empowering clinicians to amalgamate insights, foster critical thinking, and crystallize their thoughts. this introspective process facilitates a holistic perspective on experiences and can build the resilience they need to cope with the emotional burden of work in newborn intensive care. it also cultivates skills crucial for future proficiency. historically, reflection has been a linchpin in learning paradigms, enabling individuals to dissect events, analyse activities, and assimilate knowledge. in an intensive care environment with a highly technical bias, the value of reflective practice is often overlooked. engaging in reflective practice amplifies comprehension, bolsters subject mastery, and demystifies intricate subject matter. there are numerous models available to guide reflective practice,1,2 each with its unique approach. one such model, gibbs' reflective cycle,3 provides a structured framework that begins by outlining the experience to be reflected upon. it then encourages a deep exploration of our emotions, considering how we felt during the experience and afterward. the next step involves evaluating the experience—identifying what aspects were positive or negative from our perspective. this evaluation paves the way for a thorough analysis, where we seek to understand the situation and derive meaning from it. based on this analysis, we draw conclusions, considering whether different actions might have led to alternative outcomes. the final stage involves developing an action plan, outlining steps to take if we encounter a similar situation in the future. gibbs' model is particularly useful for writing reports or making recommendations for changes in practice, helping healthcare professionals continually improve their approach to patient care. using reflection in clinical practice to put this into context, imagine you are observing a baby in the newborn intensive care unit (nicu). the baby is about to have their diaper changed by their mother, who is a first-time parent learning both about her infant’s behaviour and the task at hand. a nurse is present to assist and support the mother as needed. using the gibbs model the caregiver is guided in their reflection. description: what happened? at this stage, your task is to describe the situation without making any judgments or drawing conclusions. focus on providing a detailed account of what occurred, being as specific as possible while maintaining a purely objective tone. feelings: what were your reactions and feelings? here, you should explore your emotional response to the situation, without yet analyzing it. describe what you felt, how your body reacted, and what you did, as well as how others responded to your actions. evaluation: what was good or challenging about the experience? now, you can begin to consider the situation and your responses more objectively. make initial value judgments and try to understand the experience from the perspectives of others involved. this will help you decide whether the situation was challenging or beneficial for everyone, or if it was particularly difficult for you alone. analysis: what sense can you make of the situation? what was really going on? were different people’s experiences similar or different? having evaluated the situation, you can now delve deeper into its details. consider the above questions to analyse the experience further. at this stage, you should incorporate insights from colleagues, peers, literature, and relevant theories to help make sense of what happened. conclusions: what can be concluded from these experiences and the analyses you have undertaken? what can be concluded about your personal situation and your way of working? reflection as a catalyst for learning: a practical guide for developmentally supportive care inga warren cbe, dsc. frcot1, and kaye spence am, mn, facnn2. 1 fine, uk; university college london hospital, uk. 2australasian nidcap training centre, university of western sydney, australia doi: 10.14434/do.v17i3.39753 reflecting on infant responses with parent 4 • 2024 • developmental observer when drawing conclusions, consider both the general applicability of your reflections and your specific situation. reflect on what these conclusions mean for you personally, for your immediate context, and for others more broadly. personal action plan: what are you going to do differently in this type of situation next time? what steps are you going to take because of what you have learned? finally, outline the steps you will take to improve your approach in future situations. based on what you’ve learned, plan how you’ll apply these insights to similar circumstances going forward. reflection as a four-dimension process in the clinical setting reflection can manifest as a four dimension process:4 this enables reflection to move forward and be re-conceptualised to aid practice development and understanding. reflection-before-action: this involves anticipating and preparing for an event. consider what you expect to happen and how you prepare for it. reflect on what factors you need to consider beforehand. think about your observations—how do you plan them? how do you involve the caregiver or family? were there any prior events that might influence the outcome? reflection-in-action: this type of reflection occurs at once, during the experience itself. it involves a real-time introspective engagement, requiring a heightened level of self-awareness and the ability to evaluate and adjust actions as they happen. reflection-on-action: this retrospective form of reflection allows healthcare professionals to look back on observed events, critically assess their actions, and draw valuable insights. it offers an opportunity to identify lessons learned and develop strategies for improving future care. reflection-for-action: this forward-looking approach involves contemplating future actions, often informed by past experiences. it encourages professionals to consider various approaches, refine inclusive practices, and enhance communication strategies to build and keep effective relationships. insights into the use of reflection in practice to further illustrate how reflection is used in clinical practice we would like to share with you some of the student’s reflections during a foundational program in developmental care for newborn individualized developmental care and assessment program (nidcap). the family and infant neurodevelopmental education foundation – level 2 (fine 2) places paramount importance on nurturing student learning through meticulous observations complemented by structured reflection. within the neonatal unit, mentors adeptly steer students toward introspection about specific situations involving infants and their families. drawing from the program, this paper illuminates the thoughtful impact of reflection. by spotlighting participant experiences, we will show how reflection emerges as a potent pedagogical strategy, transcending the boundaries of traditional and online learning realms. each reflective quote sits within a theme. seeing the individual questioning assumptions ‘reflecting on baby’s behaviour, i was surprised at how regulated he was for his birth gestation and corrected [age of] just 36 weeks. i expected him to be fussier and vocal particularly through the face wash and nappy change.’ emotionally challenging connecting with the baby and living their experience ‘as i watched the baby turn pale then dusky, not breathing, his body completely stiff then limp, i grieved for him. the baby desperately needed a support person, preferably [his] mother or father. after the exam i held him for a long time, muttering my apologies for his pain, wishing his parents would come soon, as he lay spent in my arms’ in-tune with the baby trusting them to do their best ‘my pulse was getting rapid along with the baby's and i was about to reach into the incubator and help the baby when his foot touched the edge of the nest. still sucking on the pacifier, he leaned his foot against the edge of the nest and soothed himself. i started silently cheering!’ awareness of pain and gaps in the way we manage it ‘this [observation] has highlighted the value of using pain tools for monitoring an infant's condition and recognising deterioration or increased pain, as well as evaluating the effectiveness of a pain-relieving intervention.’ “by spotlighting participant experiences, we will show how reflection emerges as a potent pedagogical strategy, transcending the boundaries of traditional and online learning realms.” 2024 • developmental observer • 5 realisation questioning practice ‘i wondered why we don’t often think of routine caregiving tasks as being stressful and difficult for the infant, despite frequently seeing a lot of observations during care that would indicate otherwise.’ mother’s presence and her key role in the baby’s care team ‘this observation also confirmed to me the power of a mother's observation, annie has sat by jenni’s side for hours and hours every day since she was born. ……. she is able to identify when jenni is ‘not right’, more unsettled or in fact the opposite, doing better.’ talking with parents watching, wondering and listening ‘compared to the first week or so, i feel like i am also growing in confidence when discussing the baby’s behaviour with parents, possibly because i have gained more knowledge on the subject since then, or maybe simply because i’ve had more practise at having these conversations.’ helplessness and finding resilience ‘[james] had just been born. he seemed disorientated, and his movements were all over the place. his bedside nurse had done her best to contain him in his nest, but he was still agitated and crying. this made me feel helpless. i thought about how awful it must have felt for him to be suddenly delivered, having to breathe independently.’ the reflections shared by students during their program vividly illustrate the impact that structured reflection can have on learning and practice in the newborn unit. by examining their experiences through the lens of reflection, these students have not only deepened their understanding of infant care but also developed a greater sensitivity to the needs and emotions of the babies and families they support. these reflections highlight the importance of questioning assumptions, recognizing emotional challenges, and acknowledging the critical role of parents in the care team. they also underscore the value of being attuned to subtle cues from the infant, the need for effective prevention of or management of pain, and the growth of personal resilience in the face of difficult situations. through these insights, reflection emerges as an invaluable tool for fostering compassionate, evidence-based care, ultimately enhancing both the student’s learning experience and the quality of care provided to infants and their families. in conclusion, the nidcap model of co-regulation demonstrates the benefits of incorporating reflection as a fundamental framework of practice. while this approach may seem unfamiliar in the typically action-oriented, fast-paced environment of intensive care, it is essential for the effective implementation of developmental care.5 to truly support newborns and their families, healthcare professionals must cultivate a reflective, self-aware practice that not only hones their technical skills but also deepens their ability to engage in meaningful relationships. through this integration of reflection, technical excellence, and relational engagement, the care provided becomes more attuned to the unique needs of each infant and their family, fostering better outcome and more compassionate care. reference: 1. morris th, experiential learning – a systematic review and revision of kolb’s model. int learn env. 2020; 28(8):1064-77. https://doi.org/10.1080/10494820.2019.1570279 2. ingrambloomfield b. a nurses’ guide to using models of reflection. aust j adv nurs. 2012; 28 (4): https://doi.org/10.37464/2020.384.395 3. gibbs g. (1988) learning by doing: a guide to teaching and learning methods. further education unit, oxford brookes university, oxford. 4. edwards s. reflecting differently. new dimensions: reflection-before-action and reflection-beyond-action. international practice development journal. 2017; 7 (8): https://doi. org/10.19043/ipdj.71.002 5. als h, mcanulty gb. the newborn individualized developmental care and assessment program (nidcap) with kangaroo mother care (kmc): comprehensive care for preterm infants. curr womens health rev. 2011;(3):288-301. https://doi. org/10.2174/157340411796355216 mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 https://doi.org/10.1080/10494820.2019.1570279 https://doi.org/10.37464/2020.384.395 https://doi.org/10.19043/ipdj.71.002 https://doi.org/10.19043/ipdj.71.002 https://doi.org/10.2174/157340411796355216 https://doi.org/10.2174/157340411796355216 18 • 2024 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e saint-brieuc nidcap training center saint-brieuc – paimpol –treguier hospital center, saint-brieuc france the saint-brieuc unit has 25 beds for preterm infants and newborns, 12 for intensive care and 13 for neonatology. it also has parent rooms. from 2001 to 2008, many members of the team benefited from the "introduction to developmental care" training, delivered by drs sizun and ratynski in brest, the first nidcap training center in france. this two-day training, coupled with the actions of various interdisciplinary working groups (postures, sensory environment, presence of parents and siblings, pain, carrying, reading, breastfeeding, preparation for discharge, etc.) allowed for joint reflection by the team, which then committed to a philosophy of infant and family centered care. in 2010, the brittany regional health agency financed the nidcap implementation. five registered nurses and one doctor began their nidcap training observations, and were certified nidcap professionals by 2013. a full-time equivalent position was dedicated to nidcap coordination in developmental care. all infants born before 33 weeks of gestation benefit from nidcap observations. at the same time, the maternity and neonatal intensive care units achieved certification from the baby-friendly hospital initiative. two new professionals were trained in nidcap® observations, and certified in 2017. the team also continues with various training courses to improve the support for infants and their families. these were soffi training (support of oral feeding in fragile infants), and the nbo training (newborn behavioral observation). during team meetings, the local parent’s association “bébés en avance” is contacted. this enables the service projects to be carried out in consultation with parents whose babies have been hospitalized within the unit. with the nidcap being established within our nicu, saint-brieuc hospital supported ms. guillou for her nidcap trainer training project. she was trained for three years by delphine druart, belgian master trainer, under the supervision of agneta kleberg (swedish master trainer) and deborah buehler (president of the nidcap federation international, nidcap and apib master trainer). ms. guillou brought two of her colleagues to the nidcap professional certification. at the same time, she undertook the nbo trainer training with professor sizun (nbo trainer, toulouse university hospital) and isabelle olivard (nbo trainer, brest university hospital). the saint-brieuc nidcap training center opened in january 2024. it has a collaboration with the already existing training centers in brest and toulouse, and that of valenciennes which also opened recently. this had allowed the continuation of the expansion in french neonatology units of this philosophy of preterm infant and family centered care. this dissemination is supported and reinforced by collaborative work between the different training centers, experts from the nidcap francophone association and sos préma association. doi: 10.14434/do.v17i3.39758 2024 • developmental observer • 19 saint-brieuc nidcap training center team group photo (above), from left to right : • mme robin-bregeon marie-noelle, administrative manager of st brieuc nidcap training center • dr. andro-garçon marie-cécile, md, nidcap professional and director of st brieuc nidcap training center • mme guillou aurélie, rn and nidcap and nbo trainer aurelie.guillou@armorsante.bzh • mme coer manuella, rn and nidcap professional • mme josse anne-claire, rn and nidcap professional • mme le clec’h aurélie, rn and nidcap professional saint-brieuc nidcap training center team click here to visit the saint-brieuc nidcap training center website mme collet cécile, rn and nidcap professional and nbo mme faijan céline, rn and nidcap professional and nbo mathieu, nicu head-nurse and nidcap professional https://ghtarmor.bzh/je-suis-professionnel-etudiant/nidcap-training-center-saint-brieuc/ 2023 • developmental observer • 19 n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e edmonton nidcap training centre, canada our neonatal program in edmonton, ab, canada began its journey in 1996 when dr. juzer tyebkhan first learned about nidcap. his interest and desire to bring this knowledge to our edmonton neonatal units led to nidcap training and education for a small group of physicians and staff starting with jean cole as trainer in 1998. obtaining a grant for a randomized control trial of nidcap in edmonton followed and the original edmonton nidcap team completed the study in 2004. it was subsequently published in 2009.1 this series of events was the start of bringing nidcap to edmonton and making it a standard of care in our five neonatal units across the city, which continues to the present day: stollery children’s hospital sites: • philip c. etches nicu at the royal alexandra hospital (level 2/level 3) • david schiff nicu at university of alberta hospital site (surgical/cardiac) • sturgeon community hospital (level 2) covenant health sites: • grey nuns (level 2) • misericordia (level 2) while the group membership has changed over the years, juzer became the first canadian trainer-in-training (or “tint” as it was so fondly named) with dr. joy browne as nidcap trainer and apib trainer, and dr. deborah buehler as apib trainer. over the next several years, a total of twelve edmonton professionals would complete their nidcap training under their expertise and mentorship. once juzer achieved nidcap trainer, he carried on with all training for nidcap in edmonton. today edmonton has seven active nidcap professionals, including juzer, who is also an apib professional. in 2017, we were honored to host over 100 nfi members for the annual nidcap trainers meeting and about 100 additional edmonton-based professionals for our open scientific forum of nidcap. during the meeting, we officially opened the edmonton nidcap training centre canada, or entcc. we are so thankful that we had the opportunity for dr. heidelise als to cut the ribbon and that we were able to celebrate the momentous occasion twenty-one years in the making with so many of the nfi family present with us in our city. of course, we must mention that none of this would have been possible without the hard work and dedication of many people over the years. andrea nykipilo and juzer tyebkhan, co-directors, entcc nidcap team doi: 10.14434/do.v16i1.35778 20 • 2023 • developmental observer so, you might be wondering, what have we been up to since then? as for most people across the world, the past three years have challenged the edmonton nidcap team, but as we say in the world of development – the pathway continues because adaptive strategies arise to overcome hurdles. entcc has navigated the challenges and looks ahead to the next steps of developmental progress. entcc’s goals remain: • education and nidcap training • care and advocacy for babies, families, and our neonatal professionals • furthering the scholarship of developmental care education and nidcap training we believe that the cornerstone to ensuring that nidcap remains a standard of care in all units in edmonton is a foundational training for staff. in 2018, we began to instruct the fine (family and infant neurodevelopmental education) program as the entry to nidcap education. many interdisciplinary participants from across canada have now attended the fine level 1 workshops at entcc. this allowed us to bring education and understanding of nidcap training to hundreds of people throughout 2018 and 2019. as well, a small number of edmonton staff are currently taking fine level 2. a workshop was held in mumbai, india in november 2021 attended by 13 professionals from five cities. we are working with our colleagues in the nicus in india to further this international training collaboration. slowly, as gathering restrictions have eased, we have started offering the training in edmonton once again in 2022. as nidcap trainer for entcc, juzer continues to do nidcap training for new trainees. we hope to see our foundational education lead to future nidcap training opportunities across canada and elsewhere. in addition, we are looking to the future with an innovative mindset by collaborating with academic technologies at the university of alberta to create a platform of online resources for nidcap. we continue to create and collect material for future video-based learning of infant neurobehaviour. one main lesson that we learned during the pandemic pivot was that nicu professionals want education that is accessible virtually. we believe that this should not take the place of in-person, relationship-based educational components, and hands-on practice, but online, multi-modal education can augment and enhance our teaching and help us meet the needs of contemporary learners who come to entcc for training. we are excited to see what the future holds in this area! advocacy, working with patients and families despite challenges in the healthcare system in alberta in recent years and the stress experienced by families and staff related to the pandemic, members of the nidcap team have continued to provide care and support to babies and families by doing observations, providing care plans, and advocating for their optimal development. one way that we have done this is through nidcap rounds. team members at both the david schiff and the philip c. etches sites round at least one to two times monthly to meet with families and provide on-thespot, real-time developmental guidance in conjunction with observation and support for the infant. this also provides an opportunity for in-the-moment staff education, and it is our goal in the future to expand this offering to other units to reach more babies, families, and staff. as always, the edmonton nidcap team continues to play an important role in ensuring that the voices of the baby and family are heard and as such, there is a representative from the team on most nicu committees and working groups, from feeding to lung health to quality improvement. we ensure that the developmental needs of the infants are always kept at the top of the agenda. heidelise als officially opening the edmonton nidcap training centre the nidcap trainers meeting in 2017 2023 • developmental observer • 21 scholarship of developmental care over the years, entcc team members have remained active nidcap community members and participants at the annual nidcap trainers meetings by presenting abstracts and journal club entries, in addition to facilitating small group discussions. we continue to contribute to research through a developmental lens and participate in quality improvement projects. in 2020, members of the team based out of the david schiff nicu surgical/cardiac unit published2 a paper about a quality improvement project in the surgical/cardiac population entitled implementing a skin-to-skin care and parent touch initiative in a tertiary cardiac and surgical neonatal intensive care unit, contributing to the knowledge base around this population. in conclusion, entcc looks forward to 2023 as the start of a new year helping babies and families advance on their pathways of optimal development. we intend to hold more educational workshops and expand online educational resources and we hope to re-energise formal nidcap and apib training now that restrictions on travel are fading away. entcc and its activities continue to be supported by the stollery children’s hospital foundation. we thank them for naming nidcap a “pillar of excellence” and remain grateful for the ongoing trust and confidence in nidcap and the entcc in providing the best possible outcomes for babies in our care. references 1. peters kl, rosychuk rj, hendson l, coté jj, mcpherson c, tyebkhan jm. (2009). improvement of shortand long-term outcomes for very low birth weight infants: edmonton nidcap trial. pediatrics, 124(4), 1009–1020. https://doi.org/10.1542/ peds.2008-3808 2. levesque v, johnson k, mckenzie a, nykipilo a, taylor b, joynt c. (2020). implementing a skin-to-skin care and parent touch initiative in a tertiary cardiac and surgical neonatal intensive care unit. advances in neonatal care, june 24, 2020 volume publish ahead of print issue -lhttps://doi.org/10.1097/anc.0000000000000770 teaching fine crystal and julia on developmental rounds mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 10 • 2023 • developmental observer f a m i l y v o i c e s it was an amazing summer back in 2008 as we were on vacation with friends. after several intracytoplasmic sperm injection (icsi) procedures, i was pregnant with twins. we were expecting two little girls. i remember the first kicks and the butterflies in my belly. in week 21 of my pregnancy, my doctor saw a problem. there was a small amount of amniotic liquid, and he told me to go home and get a lot of bed rest. after a while, i started bleeding and went to the hospital. i was in shock with nightmarish fears. everything had changed within a few hours. my water broke and i feared this was the beginning of the end. my husband spent the night with me trying to comfort me. later he told me that he was going outside so that he could cry alone. i was not able to see the sadness in his eyes. i was in much pain and was laboring for 22 hours and then gave birth to two baby girls. i was only 24 weeks pregnant. one of my babies was 730 grams and the other 680 grams. after birth, the babies were taken away immediately, and i was not able to see them. at that time this was the practice in bulgaria. i went back to my room and fell asleep. i was so excited yet angry. i remember that the first thing i wanted when i woke up was to go home and start a new life. however, none of this has happened. feelings of shock and disbelief i was called into the nicu to see my babies. in the beginning, i was crying and in denial about having my babies. i was sure both had died. and then i saw the most perfect and beautiful babies in the incubator lying next to each other wearing white and pink caps. there were so many cables and wires, and i will always remember the terrible noise in the ward. after two days, my smallest baby died. she was too fragile and had no chance of survival. she never received a name or a birth certificate. she was considered biological rubbish and was taken away and discarded. after 7 days, according to bulgarian law, we gave a name to our only live child – alexandra. she spent five months in the nicu, and it was a huge fight for her. alexandra was in a private hospital, and i was going to see her every day. at that time, i was not allowed to breastfeed. after i gave birth, the doctor gave me pills to stop my milk. they believed there was no chance for my baby to survive! i was not allowed to do kangaroo care and was only allowed a few minutes next to the incubator. i hugged alexandra for the first time four months after her birth. it was a birthday present from my husband, but she was still attached to the breathing machine. it was a long treatment without success and we arranged for alexandra to be transferred to another hospital in israel. we paid a huge amount of money to hire an air ambulance because there were none in bulgaria and there are still none today in 2023. the ambulance came and the doctors realized she was in terrible condition and was intubated and would not transfer her in this condition. we were returned to the hospital after five hours. alexandra was getting worse day by day and three days after this situation, we were called to say goodbye to her. it was the worst moment in my life. i went to alexandra’s room for the last time and approached the incubator. her oxygen saturation was between 80 and 40. she was ready to go. my husband stayed until dawn. i was there, talking to her, touching her but her skin was cold. i knew it was over. i said to her – “my dear alexandra, now you can go. we will love you forever”. i waited for the scariest phone call which came at 4 pm. alexandra was gone. my whole world broke. i most families are not prepared for the possibility of a premature delivery, and the experience of having a premature or fragile infant can be overwhelming. providing information regarding prematurity prior to a baby’s delivery and during a baby’s course in the neonatal intensive care unit and through discharge to home is imperative, yet these resources are not always readily available and is in some countries, are very limited if available at all. in this mother’s story, we hear firsthand what it was like for her and her husband when their baby girls were delivered and how the lack of information about prematurity and resources for parents, as well as, their personal loss spurred her to take action and advocate for change. my personal loss provoked me to fight nina nikolova, bulgaria alexandra column editor: debra paul otr doi: 10.14434/do.v16i3.36567 2023 • developmental observer • 11 f a m i l y v o i c e s martin and joana at 6 months of age family photo taken in 2021. martin and joana are 11 years old was terrified and cried for days. alexandra was buried next to my grandmother. there is nothing worse than to bury a child before yourself. next story hope in 2010, i was pregnant again with twins – a boy and a girl. i was happy and at the same time terrified. i spent seven months on bed rest and medication, praying every day for a miracle to happen. on the 9th of september in 2008, my first set of twins were delivered, and my first baby died on the 11th of september. my second set of twins were born on the 11th of september 2010 at 29 weeks gestation. they were tiny little miracles. joana weighed 930 grams and martin 1170 grams. this time i was able to breastfeed, hug, and touch them every day. they spent three months in the hospital and came home healthy and were amazing little beings. the experience of having a baby born prematurely is difficult, sad, challenging, and amazing all at the same time. to be a parent of a premature baby is a thorny path that we must walk. i am more than happy and thankful today with my 12-year-old twins, and at the same time, i keep my love for my two little angels in my heart. a way forward-imagining and realizing big possibilities in 2012, i and two other mothers (together we had five premature babies), decided to establish the first and only bulgarian foundation for premature children – “our premature children foundation”. we are strong and we have changed so much in bulgaria including providing information about prematurity and how to support babies and families in the nicu. our foundation gives hope, and help to families, healthcare professionals, and babies. now there are family rooms in hospitals, we have created a resource booklet for parents, and we speak the same language with the doctors and healthcare professionals. our premature children foundation is the first non-governmental organization founded in support of bulgarian premature children and their families. our mission is to make a difference for those babies and make sure they have the best possible chance of survival and of reaching their full potential. what we do • raise awareness about preterm birth and possible complications. • partner with the government in terms of improving the situation of mothers and newborn babies in bulgaria as well as initiating constructive dialog with political leaders. • establish a network of experts, international and private sector organizations, officials, celebrities, media, business partners, and parents united by the idea of ensuring the best start in life for all premature and sick babies. • provide easy-to-understand information and make sure that all families have access to it so that we help them better understand the situation that they are dealing with. • facilitate medical and psychological support for affected families. • support families through our website, social media, publications, and events. • local support groups with volunteers and psychologists. • online consultation with psychologists. 14 • 2023 • developmental observer i am monique oude reimer-van kilsdonk and i live in the netherlands in a town called barendrecht. this small place is located 12 km from rotterdam where i work. usually, i cycle to work but when it rains, which i really hate, or snows, i take the train and metro and very occasionally the car. parking in rotterdam is very expensive, making the car my least favorite option. for almost 30 years i have worked at the sophia erasmus mc sophia children's hospital in the neonatology department. previously i was a neonatal intensive care nurse and since 2004 i have worked for nidcap as patient care advisor and nidcap trainer. i like to travel, which is an excellent combination with being a nidcap trainer. i like to read and walk, especially on long-distance trails. i used to bake birthday and wedding cakes as a hobby, yet this is a very time-consuming hobby and i no longer have time for it due to my workload. i will pick it up again when i retire. my nidcap journey it was sometime in 1998 that i first heard about nidcap. the department was conducting a study on developmental care and looking at interventions for prematurely born babies. the research showed that nidcap would be the best fit for our department and our patient population. staff could apply for nidcap training. three people were given the opportunity to do the nidcap training. after a lot of thought and discussion which i found daunting, i was accepted much to my delight. although i have experienced ups and downs in recent years, i have never regretted this choice. in 2000, i started nidcap training under the guidance of nidcap master trainer agneta kleberg. i had no idea what to expect and was anxious that everything had to be done in english. my english was not very good at the time, and i found it challenging! fortunately, i was able to start with two other colleagues. we were very much in support of each other and we could always turn to our nidcap trainer. her humanity, but certainly also her extensive knowledge, really helped me to complete the nidcap training and she is still a role model to me. after my nidcap certification, outside of my hours as a nurse, i was able to perform nidcap observations on the unit one day a week. nidcap trainer dr. nikk conneman joined our department in 2004 which gave us the opportunity to open a nidcap training center, the sophia nidcap training centre, rotterdam. soon i was able to spend more hours on nidcap observations, implementation, and supporting babies and their parents. after a few years, my workdays changed to one day a week as a neonatology nurse and four days a week for nidcap. because keeping track of the technical aspects of such an intensive department requires a lot, i decided at some point to dedicate myself completely to nidcap. first my title was nidcap consultant and now this position has changed to ‘advisor patient care development-oriented care’. the work as a nidcap professional is much more than doing observations. we also plan care for the babies and guide parents and colleagues. in 2017, i took the step to become a nidcap trainer under the guidance of dr. agneta kleberg and dr. joy browne. i felt privileged to be trained by these two remarkable women, increasing my knowledge and skills through their guidance and feedback. for the apib part of the training, i collaborated with the professionals in toulouse, france, and look back on that time with great pleasure. i have been a senior nidcap trainer now for two years. a step that dr. heidelise als assigned to me just before she died. my passion my passion has fluctuated in recent years. seeing parents grow their parenthood has always encouraged me to persevere. i think it's fantastic to guide parents in this process, not only to see how they slowly recognize their infant's behavior and how they react to it, but also how empowered they become at times when they feel that caring for their infant is not the very best without developmental care. in recent years, we have started treating younger and younger newborns. seeing the strengths these newborns can show us, no matter how small, makes me proud. it really touches me to see that hand that still manages to go towards the mouth and that cautious attempt to open an eye. in recent years, the passion for providing education has been added to my role. it is quite rewarding to see the wonnidcap leader profile monique oude reimer-van kilsdonk monique oude reimer-van kilsdonk doi: 10.14434/dov16i3.36569 2023 • developmental observer • 15 der on the face of a student when they see and hear why we do nidcap and their responsibility for it, fueling their passion to eventually work unconditionally for that infant and that parent. of course, there have been times in the last 20 years when i've thought ‘i'm quitting’. frustration, overload, misunderstanding, and not feeling heard were all feelings that occasionally i felt, yet there was always something that helped me through. with my colleague, nikk conneman, it was possible to regularly evaluate and reflect. i can also contact my nidcap colleagues, and vice versa. it helps to know that others also encounter such feelings. after discussion, you can usually get back to it. occasionally i have chosen to contact my master trainer. nidcap future when i look at the netherlands, i think nidcap will slowly expand. we provide a lot of foundational education and i’ve noticed that interest arises from there. it's slow, but i'm fine with that. we are a small country and besides the fact that it is important we have nidcap specialized care providers, i also think it is important that the foundation is good. we are working towards individualized developmentally oriented care becoming a permanent part of the nursing and medical training courses. globally, i also see promising growth of nidcap in europe, which comes from more foundational education. i personally think the future lies in having foundational developmentally oriented care in both nursing training and in the training for doctors. which educational program it will be is, i think, less important, so long as it is based on the synactive theory of development by heidelise als and perhaps endorsed by the nfi. a team could be put together to really look at the content. from that foundational education, some students could go on to more specialization, like nidcap training. my success what is success? i am proud that i have been able to create my own position, and work in an environment where individualized developmental care is included in the vision of the department and generally supported by the management team. i see parents spending more and more time in the department and we still successfully implement in small steps. i am proud of my colleagues who, despite the busy times in the department and staff shortages, continue to do everything they can to spread the word about nidcap and guide newborns, parents, and colleagues. i can always count on them when, due to circumstances, i must take a step back. they have taught me that delegating and trusting each other can only improve cooperation. i'm proud of that! my advice the advice i would give someone who is just starting their nidcap training is reflect! make sure there is someone in your area that you can turn to. that doesn't always have to be an official meeting, but just being able to talk and reflect can be very helpful – and be patient. there comes a time in your education when you ‘see the light’ and then really experience why you do it all. a wish of mine would be to have reflective processing groups worldwide. a small group where you can exchange your experiences with each other occasionally. groups for master trainers, trainers, professionals, and students. we face the same strengths worldwide, but certainly also the same challenges. sharing and learning from each other seems to me to be of enormous value. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 developmental observer 20 25 | v o l 1 8 | n o . 1 the official publication of the nidcap® federation international dr. heidelise als was more than a mentor; she was a guiding force in shaping my career and fostering my personal growth. her commitment to compassionate care continues to impact my approach to developmental care, along with engagement with life, family, and my professional career. dr. als shared her life experiences generously, weaving personal insights into her philosophy. her support extended to fostering my professional growth and instilling faith in my potential, which remains a constant source of motivation. to me, she was family, always available with sage advice and encouragement. i draw directly from the principles dr. als instilled in me. i strive to embody her philosophy that the care we provide effects outcomes and lifelong development. her words, “it matters how we listen to the voice of and care for each newborn and each family. it matters how we care for one another and for ourselves,” continue to inspire my approach. these words serve as a powerful reminder of the profound responsibility we hold as professionals in newborn care to deliver thoughtful, individualized attention during the earliest and most critical stages of a child’s development. the heidelise als lecture – 35th nidcap trainers meeting 2024 shaped by wisdom: dr. heidelise als’ impact on my professional journey the path forward is rich with opportunities. -samantha butler inside the heidelise als lecture ................... 1 editorial .............................................................. 2 the synactive model: ........................... 6 individuals, hospitals, and systems abstracts from the 2024 .................. 9 nidcap trainers meeting poster abstracts from the ............. 16 2024 nidcap trainers meeting behind the scenes ............................... 24 global perspectives ........................... 27 nidcap training centers ................ 31 worldwide: france nidcap training centers ............... 35 doi:10.14434/do.v18i1.40856samantha butler, phd doi:10.14434/do.v18i1.40852 continued on p.2 2 • 2025 • developmental observer this issue offers insights from the recent 35th nidcap trainers meeting, highlighting the exchange of knowledge that defines our global community. these meetings continue to grow in strength and scope, showcasing an outstanding diversity of information and experiences. the picturesque setting of toulouse in the south of france provided a vibrant backdrop for the event, which also served as an invaluable opportunity for networking among delegates representing many countries. in this issue, samantha butler shares the wisdom and legacy of heidelise als, taking us on her inspirational nidcap journey—a testament to vision and dedication. deborah buehler introduces us to an innovative perspective on the synactive theory, exploring its application across all areas of care. the abstracts featured in this issue reflect the diversity and depth of the meeting. from groundbreaking research and new educational approaches to parent-led initiatives and strategies for expanding nidcap expertise. additionally, we are delighted to include poster abstracts that highlight the incredible work of our nfi members. for the first time, we have translated several articles from the original french, making their valuable content accessible to a broader audience. this new venture was made possible thanks to the generous assistance of kiki remont, and i extend my gratitude for her efforts. i would love to hear your thoughts on this new approach to fostering accessibility and understanding. thank you for your continued engagement and dedication to advancing the nidcap mission. kaye spence am facnn senior editor – developmental observer adjunct associate professor australasian nidcap training centre/ university of western sydney editorial cover image: photograph used with permission of the mother in shanghai doi:14434/do.v18i1.40855 a french treat dedication to care from the first moment i observed dr. als with an infant, i was struck by her profound compassion and keen insight into the experiences of newborns and their families. her dedication to improving care for the most fragile patients deeply resonated with me. she demonstrated that even the smallest adjustments, rooted in respect and understanding, could create a transformation on the well-being of others. dr. als’ influence guides how i create environments that prioritize family-focused developmental practices. dr. als emphasized that every detail matters, not just in medicine but in every aspect of how we present ourselves. she reminded us that we are public figures and thus all interactions matter and deserve intention. whether creating an environment to uplift others, preparing for an assessment, or organizing a meeting, attention to detail shapes how messages are received and how others feel within that space. she emphasized the power of projecting confidence, clarity, and empathy to rear connection and trust. this philosophy has extensively shaped my approach, driving me to approach interactions and decisions with thoughtfulness, ensuring that i reflect a sense of well-being, respect, and intentionality. philosophy and mentorship this deep commitment to care was also reflected in her approach to mentoring. dr. als embodied an extraordinary work ethic, dedicating countless hours to her mission and inspiring others with her drive and high expectations. her approach to training was rigorous and comprehensive. through the nidcap curriculum, she cultivated a philosophy of thoughtful engagement, observation, and practice, cultivating a community of clinicians dedicated to individualized developmental care. i feel a profound responsibility to honor and carry forward her vision. in my own nidcap training efforts, i strive to uphold her meaningful approach, providing structure and depth while also offering additional guidance to make the process accessible and encouraging for trainees. this sense of responsibility drives me to motivate others to see the insights she uncovered, publish meaningful research, and promote transformative care practices that improve outcomes for infants and families. dr. als fostered a commitment to listening to, supporting, and inspiring others. through her example, i advocate for the vital role we play in the lives of infants, their families, and others. i believe that as a professional in the field of neurodevelopment, acknowledgments: external reviewers 2024 – samantha butler, marzieh hasanpour, kiki remont. erratum: vol 17, no 3, page 16. the image caption should read: dr. mohammad heidarzadeh and dr. marzieh hasanpour. continued on p.3 2025 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master and apib master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board we hold a position of immense responsibility, to serve as the bridge between science, clinical care, compassion, and advocacy. our role transcends the walls of hospitals and the pages of medical journals; we serve as the voices for those who cannot stand up for themselves. advocacy in this context is not merely a choice, it is an ethical obligation. we are called to utilize our expertise, our voices, and our influence to ensure that our patients, their families, and our colleagues are recognized and prioritized. by doing so, we fulfill our moral duty to make a meaningful difference in the lives of those who rely on us most. i see advocacy as a natural extension of compassion, whether we are caring for a newborn in the icu, mentoring colleagues, or helping others navigate professional challenges. one of the most compelling reasons for our activism is the simple fact that hospitalized newborns cannot speak for themselves. infants, particularly those undergoing surgical interventions, are in their most vulnerable state. when we advocate for newborns, we are addressing their immediate medical needs and nurturing the foundation of their future health and developmental outcomes. as is the motto of nidcap, we are the voice of the newborn, ensuring that every decision made respects individuality and promotes growth. dr. heidelise als and dr. samantha butler. continued on p.4 4 • 2025 • developmental observer dr. als created nidcap, which provided a way to observe and understand infant behavior, minimize stressful experiences, decrease the separation of infants from parents, and optimize development with consistent caregiving. the art of reading infant behavior, a skill dr. als pioneered and emphasized, provided an understanding of the infant’s unique experiences and responses. by prioritizing observation, we collaborate with infants to enhance their development in a personalized way. i strive to motivate others in thoughtful interpretation of infant behavior, moving beyond surface-level solutions to connect with our patients, ensuring that every interaction is meaningful and tailored to a family’s unique circumstances. this approach was especially crucial during my transition from newborn medicine to the world of cardiology, where infant behavior varies greatly, but the ability to read and respond to cues remains invaluable in providing effective care. dr. als frequently reminded us of the meaningful influence of language in shaping perceptions and practices. she prioritized choosing words thoughtfully, because the language we use in policies, discussions, and everyday speaking reflects our values and priorities. this mindful use of language encourages us to affirm the roles of infants and families and avoid diminishing their significance. in my professional career, i am mindful of the power language holds and the impression it has on how we perceive relationships, responsibilities, and roles within the icu. nidcap care involves creating a culture where the language used consistently respects and values families, team members, and the infants themselves, reinforcing a collaborative and compassionate approach to care. dr. als’ teachings went beyond advocating for infants and families and extended to highlighting the importance of nourishing all members of the team. this includes acknowledging the perspectives of professionals whose contributions are often overlooked. therapists, environmental services staff, and other essential contributors are vital to creating a cohesive, nurturing environment. their expertise elevates the care we provide and enriches discussions around standards of practice. i actively incorporate diverse perspectives, seeking out a multidisciplinary team that includes family members, various disciplines, and inpatient staff. i take great pride in our collaborative team, where we learn from and promote one another, cultivating an atmosphere of mutual respect and shared purpose. inspiration for growth dr. als was a positive energy in the field of newborn medicine. she supported engaging with the infant rather than simply offering treatment, at a time when the medical world often overlooked the individuality and humanity of newborns and failed to fully acknowledge the challenging path faced by the parents of an ill child. she moved us to strive for more. her perseverance acknowledged that rousing change can be challenging. her example continuously drives my commitment to carry forward her vision, ensuring that thoughtful, individualized care remains a priority, even when faced with barriers. her work moves me to continue my efforts, knowing that this approach holds transformative potential. she instilled the importance of continuous learning, reminding us that knowledge is ever evolving. her dedication to education stimulates me to seek growth through research, collaboration, and reflection. this commitment ensures that care practices advance alongside new discoveries, improving how we care for newborns and their families. dr. als placed great importance on reflective processing, urging us to thoughtfully consider every interaction. this approach shaped my connection between theory and practice to make intentional decisions. it also fostered a deeper understanding of how each moment fosters the emotional development of both the infant and their family, along with the professional course of myself and others. gratitude and aspiration reflecting on my journey, i feel immense gratitude for dr. heidelise als. her guidance provided inspiration, motivation, and unwavering support. she demonstrated that true leadership is about accompanying others and her belief in me served as a guiding light in both my professional and personal life. by promoting collaboration, amplifying the perspectives of often overlooked professionals, emphasizing the importance of reading and responding to infant behaviors, focusing on the significance of every detail, and committing to lifelong learning, i strive to fulfill and advance dr. als’ vision of thoughtful, intentional, and individualized care. “she supported engaging with the infant rather than simply offering treatment, at a time when the medical world often overlooked the individuality and humanity of newborns and failed to fully acknowledge the challenging path faced by the parents of an ill child.” 2025 • developmental observer • 5 carrying the vision forward: inspiring the future of developmental care together with the nidcap family and the nidcap federation international, i am dedicated to ensuring that her profound impact on newborn care and developmental practices flourishes. her legacy lives on in the countless lives she touched, reminding me daily of the difference one person can make in the world and that we can all do more. the path forward is rich with opportunities to expand the transformative principles of nidcap. future research must continue to evaluate the impact of nidcap on outcomes for infants and families, as well as quality improvement initiatives and feasibility studies in diverse healthcare settings. disseminating knowledge through impactful publications and engaging presentations will ensure that these principles reach a wider audience, inspiring others to adopt and innovate upon dr. als’ approach. additionally, increasing accessibility to nidcap training is crucial. efforts to create online resources, mentorship programs, and multidisciplinary collaborations can foster a global community of practitioners who are passionate about developmental care. by embracing continuous learning and reflection, and by championing advocacy and education, we can honor dr. als’ legacy and inspire the next generation of caregivers to amplify her vision. together, we can ensure that her teachings continue to transform lives, reminding all of us of the extraordinary power of compassion, intentionality, and individualized care. samantha butler phd attending, developmental and clinical psychologist director, inpatient neurodevelopment, cardiac neurodevelopmental program (cnp) director, national nidcap training center department of psychiatry & behavioral sciences, boston children’s hospital associate professor, psychiatry (psychology), harvard medical school, usa nidcap federation international board of directors and staff 2024 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwide childrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com monique oude reimer, rn nidcap trainer sophia nidcap & apib training center rotterdam, the netherlands charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com staff sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 developmental observer b jörn westrup is a visionary and an influencer who, together with agneta kleberg and the karolinska nidcap team, has spread the philosophy of developmental care throughout sweden and scandinavia over the past 25 years. from my point of view, björn has played an extraordinary role in the development of infant and family centred developmental care (ifcdc) and nidcap across europe and worldwide. when i met him for the first time in 2009, i was very impressed by his strength of conviction and persuasion, the finesse of his understanding of nidcap and his involvement in research in ifcdc. i had the chance to be warmly welcomed for more than one year in stockholm where i had the opportunity to “breathe” and “smell” nidcap and mother infant couplet care from the inside, especially at danderyd, ki hospital where björn was the head of department for many years. i realized how resilient and skilled he was to carry system change and to succeed in the implementation of nidcap and parental involvement as primary caregivers. this experience contributed a lot to change my perception and vision of what perinatal care can be. björn is a sensitive and endearing person, also very experienced in facilitating working groups. i learned a lot from his sense of consensus and balance while working with him as co-chair of the efcni topic expert group on ifcdc. it has been a great privilege for me to collaborate with him in a very friendly and supportive atmosphere. björn is also a great epicurean who knows at best how to enjoy great moments of friendship! we have many things to learn from your past and continuing journey, björn. thank you very much for sharing your story with us. björn westrup, md, phd 20 22 | v o l 1 5 | n o . 2 the official publication of the nidcap® federation international the key is zero separation. — björn westrup, md (continued on p. 2) doi:10.14434/do.v15i2.34360 profile inside profile .................................................................... 1 editorial ............................................................ 5 family voices ............................................... 6 world nidcap day .................................. 9 predictability of neonatal .............. 10 sucking for later developmental outcomes letters to the editor ............................ 11 supporting oral feeding in ......... 12 fragile infants science desk .............................................. 15 the use of caffeine ............................ 18 nidcap training centers ............... 20 worldwide global perspective-rwanda ..... 24 nidcap on the web ............................ 26 nidcap training centers .............. 28 doi: 10.14434/do.v15i1.33773 interviewed by pierre kuhn, md, phd 2 • 2022 • developmental observer björn westrup is a paediatrician and neonatologist with a phd. he was a senior consultant in neonatology and the director of the karolinska nidcap training and research center at astrid lindgren children’s hospital, karolinska university hospital since its start in 1999. it was the first nidcap center in europe and has played a leading role in the development of other european centers. dr. westrup was also a member of the nidcap federation international’s first board of directors. he has pioneered the development of infant & family centered developmental care (ifcdc) and mothernewborn couplet care (mncc) in europe. björn organised a unique meeting in sweden with the karolinska nidcap team. the stockholm conference on ultra-early intervention is an internationally renowned and acknowledged meeting in sweden dedicated to ultra-early intervention in ifcdc. he has been and is still very involved in research in that field and especially in immediate skin-to-skin contact in preterm infants after birth with the aim to avoid separation of infants from their mothers and fathers. björn has also chaired the topic expert group dedicated to ifcdc of the european standard of care from the european foundation of the care of newborn infants (efcni). pk: when and how did you get interested in developmental care? bw: during my first rotation into neonatology in the paediatric residency program. the hospital was a small county hospital in falun in the forest area of sweden and was quite old fashioned and had just started allowing parents into the paediatric units. parents were not allowed in the neonatal unit. i saw the importance of parents. a senior colleague and head of the paediatric public health program fought for parents to be allowed in the neonatal unit. he set me a challenge as a junior doctor to get parent’s involved in their infant’s care. i started to observe different infant behaviours when the parents were present. towards the end of 1989 i attended a conference organised by professor hugo lagercrantz at the karolinska where heidelise als was an invited presenter. i was intrigued with the combination of natural science and behavioural science. this gave me some theoretical context to explain what i had seen. on return to my unit, i mentioned this to a clever young neonatal nurse, agneta kleberg, who was enthusiastic about the concept. i arranged for funding and brought agneta to boston where we were both introduced to nidcap and apib. actually, we had just asked for a visit but were instead offered a four-day introduction of both nidcap and apib – a surprising visit but that later proved be very instrumental for the development of nidcap in sweden and europe. heidi was wise and strategically savvy as always. pk. could you tell us more about your nidcap journey? bw: when we returned to sweden, i realised that, at that point, there was not sufficient scientific evidence to a general recommendation for implementing nidcap and we needed more research before starting the program. a prospective phase-lagged observational study was commenced during nidcap training of myself and agneta. data was collected for the control infants during agneta’s and my training phase. after a wash-out period with staff training we prospectively recruited the nidcap infants and parents. the main findings of the three-year follow-up was a difference in behaviour in the nidcap cohort. there were fewer internalising problems and better parent child interactions in the nidcap group. we found no short-term benefits. when hugo lagercrantz in 1994 heard about our study in falun, he invited us to stockholm to conduct a randomised controlled trial on nidcap as part of our phd programs. at the same time, we continued to consolidate the nidcap based care in falun, which took a lot of energy. agneta wrote the swedish handbook on nidcap which was also translated into norwegian. she was a fantastic tutor and implementor. nevertheless, it was a great challenge to promote nidcap as it was quite controversial, and many professionals in the neonatal community in sweden and internationally were quite sceptical. however, more parents were included in their infant’s care and were very positive. in addition, we had important and continuous support of two professors hugo lagencrantz from stockholm, and nils svenningson from lund. despite the sceptic, we were not discouraged and continued. there was a gradual acceptance, however it is still not in all units in sweden. today nidcap and/or fine is practiced in 15 units across sweden. fine has been very well received and it led to more nidcap training. i believe the development of fine has been crucial for ifcdc and nidcap. we see more people interested in nidcap. pk: can you summarise why nidcap is essential to you? bw: firstly, it is very attractive to organise the care according to a framework that incorporates natural, behavioural sciences and theory of systems change. secondly, the core pillars are ethical for sensitive care based on the infant’s own voice and behaviours, and thirdly, the shortand long-term research results show positive effects on both child health and development and parents wellbeing and mental health. pk: can you tell us how you see infant family centred developmental care and nidcap – are they the same? bw: ifcdc is a generic term for a framework of newborn care that incorporates the theories and concepts of neurodevelopment, neuro-behaviour, parent-infant interaction, parental involvement, breastfeeding promotion, environmental adaptation, and change of hospital systems. it is based on the leading-edge work of als and her colleagues in the nidcap federation international (nfi) and brazelton and on the world association for infant mental health declaration of profile bjorn westrup phd, continued from p. 1 2022 • developmental observer • 3 infants’ rights. the core pillars of ifcdc are sensitive care based on infant behavioural communication and cues gives the infant a voice and is beneficial for brain growth, parent engagement supports parental wellbeing and infant development, and customised adaptations of the nicu environment and hospital system as a whole. ifdc is more descriptive and general in terms of ethics and legal benefits. whereas nidcap is a philosophy and a caregiving approach that has a training program, so far, is the only program that includes all aspects of ifcdc. the work of als and the nfi has greatly influenced on the concept of ifcdc and will surely continue to play a significant role in its future development. pk: are there other programs that are part of ifcdc? bw: yes, there are many and some quite specific. for example, breastfeeding, and skin-to-skin care are important components of ifcdc. there are also more specific programs. however, nidcap is the most developed and research based. [figure 1] as far as i have understood, ficare (family integrated care) is for example a program for parental involvement more, and in itself not a program that supports the whole idea of ifcdc. in contrast, the close collaboration with parents program include most of the components of ifcdc, especially the behavioural part and parental involvement. pk: can you tell us how you became involved in the efcni standards and how important they are to you? bw: these standards are very important tools to initiate change and improve the quality of care in europe and beyond. most importantly they are multi-disciplinary. they are going to be revised regularly and the expert groups have started inviting comments and recommended changes. it is important to acknowledge that the initiative for the standards was taken by parent organisations under the broad umbrella of efcni. the standards were written in collaboration with parents and endorsed by professional and scientific societies in europe. standards are playing a role globally. the us design standards and idc standards are complimentary to the european standards, and i strongly believe the collaboration between the two groups will continue. de ve lo pm en ta l c ar e pr og ra m s/ in te rv en tio ns breastfeeding coinn council of international neonatal nurses eadcare european association for developmental care efcni european foundation for care of newborn infants icm international college of midwives inkmc international network of kangaroo mother care nfi nidcap federation international waimh world association of infant mental health wapm world association of perinatal medicine who baby friendly initiative theories and training taught by professional organizations (eg. nfi, brazelton touchpoint center), higher education facilities, local health organization/services. the programs vary in regards to comprehensiveness of training and support for systems change. some programs include several or all interventions exemplified above. global refers to all babies born in high, middle and low resource settings. developed by bjorn westrup and kaye spence for the nfi work in progress theory base & training requirements global targets figure: global perspective of infant and family centered developmental care collaboration between organizations (not exclusive, examples only) immediate skin to skin contact kangaroo mother care basic, intermediate and advanced prrograms nidcap nidcap directed care nidcap certified nurses all newborn infants in all settings stable neonates at term stable neonates, continuous, 24/7, follow-up program neurodevelopmental care scbu/nicu/ follow-up hospitalized newborns know ledge translation and system s c hange 4 • 2022 • developmental observer pk: what about the who study on immediate ssc with preterm infants: could you summarize the scientific rationale for us? bw: the rationale is that 20 million babies are born worldwide annually with a need for neonatal care. we cannot only focus on high income countries. we need to turn to countries with high mortality in low-birth-weight infants globally. if we want to make a difference, then we need to consider the lowand middle-income countries. my experience at the karolinska and through my lifelong experience with ifcdc and nidcap makes me realise it is beneficial with early skin-toskin contact for small vulnerable infants. in collaboration with nils bergman from south africa, we undertook observational studies to improve short term health outcomes in lowand middle-income countries to increase survival. one finding was better stabilisation at birth. it took eight years to convince the who and the melinda and bill gates foundation to fund the study in nigeria, malawi, ghana, tanzania, and india. the target group were infants born between 1000g and 1800g. we planned to recruit 4000 maternal/infant pairs. however, the data safety and monitoring board stopped the trial after 75% recruitment due to a statistical benefit in the intervention group, see: who immediate kmc study group et al. immediate “kangaroo mother care” and survival of infants with low birth weight. the new england journal of medicine, 2021, 384, (21): 2028-2038. doi:10.1056/nejmoa2026486 pk: what do you see as the challenges and barriers for implementing early skin to skin for infants over 1000g? bw: there needs to be a lot of training and support for immediate skin-to-skin. the key is zero separation – keeping infants and their mothers close both physically and psychologically. it necessitates a very strong collaboration with obstetrics in order to provide medical care for the mother while she stays in the nicu – mother-newborn couplet care (mncc) in mother-nicus. however, you need to have strong leadership to set the goals and change professional attitudes through training and education. we also need changes in nicu design as well as ensuring quality care for mother /infant dyad. pk: is immediate skin to skin challenging? bw: it is very challenging, and it will take decades before there is a general implementation across countries and globally. i would like to finish with a positive outcome. following on from our and other studies, the government in india have issued a directive to re-build all the nicus, that is over 1000 units. the goal is to accommodate mothers close to their infants as well as implementing developmentally supportive care. moreover, who will in 2022 publish a general recommendation of immediate and continuous kmc for all sick or small newborn babies. it will take many years to ensure infantand family-centered developmental care including newborn couplet care for all – however we have made an important start. pk: has nidcap affected your personal life? bw: it helped me enormously in my clinical work as a neonatologist, it makes it much easier to assess the condition of the newborn and its family and understand their needs. nidcap makes the work more interesting and rewarding. my nidcap work and involvement in training and research is the foundation of my engagement in who global research scale-up project of kmc. also, it has been very important for my own scientific journey. on a personal level, i am not so sure that my own family members are convinced that i am successful in relationship-based and not task-oriented behaviour but it hopefully has helped. pk: thank you very much björn for your time and kindness during this interview and also for all the incredible work you have done for the care of vulnerable preterm infants and their families.a mother’s presence the netherlands nidcap care in the moment us ed w ith p er m is si on r ac he lle v an d er m eu le n 14 • 2024 • developmental observer greetings (durood! دورد) from iran to the world i ran has a history of over 3,000 years and is home to one of the oldest known civilizations. it is the 18th largest country in the world and the 17th most populated nation. iran is one of the world’s most dynamic and prolific centers for art, architecture and literature. inspired by various schools of thought and ideologies, artists, architects and literary figures alike have made iran into the unique center of creativity and ingenuity it is today. as asia’s fourth largest united nations educational, scientific and cultural organization world heritage site, iran houses many historical sites and tourist attractions in various provinces and cities. newborn infant health in iran neonatal medicine officially began in 1988 with the construction of the country’s first nicu. the specialty became established with the founding of the iranian associations of neonatology and of perinatology in 1998 and 2003 respectively. these associations supported the continuous expansion of the number of neonatal intensive care units (nicus) and of trained perinatal health care providers. iran has made substantial progress in neonatal health with the neonatal mortality rate (nmr) declining from 27 deaths/1000 live births in 1990 to 8.6/1000 in 2017. despite the progress, iran’s nmr is considered average, leaving room for improvement, especially considering 57% of deaths in children under 5 years occur in the neonatal period (2017).1 establishment of developmental care and nidcap marzieh hasanpour, phd was a faculty member at isfahan university of medical science (mui) when the neonatal intensive care nursing master's program was launched in 2009. she led the pediatric nursing department and taught developmental care topics based on the work of als,2 and kenner and mcgrath.3 that same year, a brief visit to the ucsf children's hospital and nursing school in san francisco, usa, enabled the start of a developmental care strategy to be used in iran. following this visit, dr. mohammed heidarzadeh, chief of the national neonatal health office, who had a long-standing interest in developmental care and educating using the training of trainers model (tot),4 suggested project collaboration with the ministry of health (moh). in a 2013 meeting at the moh, dr. hasanpour presented information about nidcap and recommended inviting foreign trainers and the model’s founder to train a national group in nidcap. the request was approved and plans were made to host iran’s first developmental care (nidcap) course at isfahan university of medical sciences. dr. heidelise als and dr. nikk conneman accepted the invitation to provide training. unicef provided financial assistance for the program and mr. amirhossein yarparvar, a unicef representative, helped coordinate. a memorandum of agreement was signed by the nidcap federation international (nfi), unicef, and the nation's neonatal health office to plan and provide nidcap in iran. during planning in 2013, dr. hasanpour became a member of the nfi. additionally, she spent two weeks under dr. dorothy vittner’s supervision in the wakemed nicu at the carolina nidcap training center in raleigh, usa and a few days with dr. juzer tyebkhan in the royal alexandra nicu at the edmonton nidcap training centre, canada. finally, a highly successful five-day workshop occurred in october 26-30, 2013, with 65 experts from across iran, including officials from the ministry of health's department of neonatal health, representatives from unicef, and international trainers dr. als and dr. conneman. global perspective on developmental care in iran marzieh hasanpour1, mohammad bagher hosseini2, mohammad heidarzadeh3 doi: 10.14434/do.v17i3.39757 1 pediatric and newborn intensive care nursing education department, school of nursing and midwifery, tehran university of medical sciences, tehran. 2department of pediatrics, school of medicine, department of neonatology, tabriz university of medical sciences, tabriz, iran. 3department of pediatrics, school of medicine, zahedan university of medical sciences, zahedan, iran. attendees at 1st workshop 2024 • developmental observer • 15 after the workshop, a national agreement was signed by the moh, unicef, and the nfi selecting four hospitals with nicus to implement the developmental care (nidcap) pilot program: hafez hospital in shiraz, al zahara hospital in tabriz, mahdiyeh hospital in tehran, and valiasr hospital in tehran. as a result, the national developmental care committee was established. dr. hasanpour and dr. heidrzadeh, along with eight others, trained with dr. als in tehran, and dr. conneman provided training in tabriz and shiraz to eight persons. all, except two who withdrew from the program, were certified as nidcap professionals in 2016 and 2017, leaving a total of sixteen graduates. additionally, iran actively participated in world prematurity day and world nidcap day (wnd) events. activities were photographed for posters and shared with the nfi. every semester, nidcap bedside observations are taught to neonatal nursing master's students. some nfi teaching materials for parents were translated into farsi for the nfi website. the farsi segment of the incubator podcast (sponsored by chiesi) invited dr. hasanpour to speak about wnd 2024 and share 10 pearls of wisdom along with the nidcap care model. insight into developmental care in tabriz al-zahra hospital, an academic perinatal hospital located in northwestern iran and affiliated with the tabriz university of medical sciences, has 50 nicu beds, 20 neonatal beds, and 10 kangaroo mother care (kmc) beds. dr. mohammad bagher hosseini is a professor of neonatal-perinatal medicine, a nidcap professional, and the head of the nicu at al-zahra hospital. during 2015-2017, two nurses and two physicians were trained and certified as nidcap professionals. three remain at the hospital and are dedicated to training clinical nurses and specialist and sub-specialist assistants in developmental care. developmental and supportive care for premature infants starts in the operating and labor and delivery rooms. about 80% of nicu care is provided as four-handed care. infant sleep support, pain management during painful procedures, and kmc are optimal. mothers not yet discharged from the hospital are present at their baby’s bedside three times a day accompanied by maternity unit staff. after their discharge, they are free to be with their baby 24 hours a day and play an active role in caregiving. due to limited physical space and insufficient privacy, fathers are present at the baby's bedside twice from 12-1 and 3-4 pm and, of course, in a coordinated and flexible manner at other times of the day and night. they participate in their baby’s feedings and kangaroo care. the nicu environment is good in terms of light and sound. only during the shift handover is the sound a little above the desired level. all preterm babies receive individualized care in a supportive nest and older babies are swaddled. facilities are available for mothers in the neonatal unit and the nicu, including a kitchen, bathroom, library, and a room for mothers' rest. about two years ago, the continuous kmc figure 1: timeline of developmental care implementation in iran1 2012 2013 2014 2015 2016 2017 2018 introduction of nidcap to neonatologists and nurses first nidcap workshop for 65 personnel from different universities study visit to the netherlands mohme formally adopted nidcap first national iranian committee for nidcap first survey on nidcap to 23 hospitals and 9 universities preparation of 4 iranian centers for nidcap training visit to sophia hospital in the netherlands iranian trainers for nidcap chosen four training sessions provided by drs als and conneman trainees worked to incorporate nidcap in their nicus spiritual and holistic care in the nicus budget allocated for nidcap introductory nidcap workshops in 13 universities nidcap introduced at numerous conferences workshop for nursing academia at iran medical center translation and adaptation of nfi documents for nidcap program two-day nidcap seminar in tehran for 350 participants developmental care packages prepared final nidcap training completed, and 10 trainees certified as nidcap professionals under dr als nidcap training completed in tabriz and shiraz 16 nidcap professionals support for scientific references for neonatal program 17 nicu pediatricians, neonatologists and nurses in tehran, tabriz, and shiraz certified as nidcap professionals support to scale-up nidcap nationally through two training workshops for 134 experts from 19 medical universities and nursing midwifery faculty support for nidcap professionals to maintain their membership of the nfi support for the assessment of nidcap in nicus based on the minimum standards for nidcap 16 • 2024 • developmental observer department started and is the first continuous kmc department with comfort facilities and 24-hour presence of mothers in iran. recently, a speech therapist was added to the nicu care team. in the 2015 initial evaluation by the moh, this centre obtained the highest average score10 for developmental care implementation out of 23 nicus selected in the country. overall, al-zahra's nicu score is 3-4 for the nidcap nursery assessment certification program. the occasional high patient census and lack of facilities for the permanent presence of fathers are among the current challenges. we are very interested in expanding developmental care programs in our unit and across the country if more support becomes available from the moh and the nfi. nidcap certifications during dr. conneman’s last visit in april 2017, nidcap certification was achieved for the 16 neonatologists and nurses working in the four pilot hospitals. table 1 (below) shows the distribution of nidcap certified professionals per pilot hospital. at the time of this writing, 12 certified health professionals remain active. ms. zahra eskandari moved from mahdiyeh hospital to the ministry of health and medical education (mohme), and later to ali asghar children hospital (tehran). dr. keyvan mirnia moved from al-zahra hospital in tabriz to the tehran university of medical sciences in tehran. dr. parisa mohagheghi moved from mahdiyeh hospital to ali asghar children hospital (tehran). dr. nikoo niknafs and dr. jila mirlashari moved abroad. ms. zahra godarzi retired. mohammad heidarzadeh moved from mohme to the nicu in zahedan university of medical sciences. ms. ameneh abroon retired. unicef support and evaluation unicef support towards nidcap was aligned with mohme strategies and priorities. nidcap was also consistent in responding to newborn and parent needs and the development of health professionals’ skills. improving neonatal care has been a priority for the mohme. the healthcare reforms put in place since 2014 prioritized maternal and child health, including neonatal health. at the nicu level, willingness to evolve professional practices and the commitment of healthcare staff facilitated the introduction of the nidcap approach and principles. overall, nidcap benefited from national leadership and an enabling environment, despite some resistance to change at the nicu level. additionally, in iran, nidcap is a gender and culturally sensitive intervention. effectiveness evaluation shows good improvement due to nidcap, including a focus on care for preterm newborns, upgrade of physical spaces and equipment, and adoption of new protocols and clinical procedures in the pilot nicus. previously, ad hoc programs like kmc were implemented in a few units, but nidcap resulted in broader changes. health professionals got involved in developmental care and interest in this field emerged. today, the presence of mothers around the clock in all units is considered normal whereas before they were only allowed to be there during visiting hours. downstream effects with only dr. mohammad bagher hosseini and dr. marizeih hasanpour figure 2: initial distribution of nidcap training in pilot hospitals.1 nidcap certified professionals hafez hospital (shiraz) al zahra hospital (tabriz) mahdiyeh hospital (tehran) valiasr hospital (tehran) mohme total neonatologists dr seyed mostajab razavi dr keyvan mirnia dr mohamad baqer hosseini dr parisa mohagheghi dr hosein dalili dr nikoo niknafs mohammad heidarzadeh 7 nurses ms masoumeh pakrouh ms marzieh sami ms hamideh nikzad ms elaheh rastkar ms zahra eskandari (ali asghar hospital & moh) mrs zahra godarzi ms ameneh abroon dr marzieh hasanpour dr jila mirlashari (faculty of nursing) 9 total 2 4 3 6 1 16 2024 • developmental observer • 17 some evidence include the improvement of the quality of care and reduction in preterm morbidity. however, publications in specialized medical journals regarding nidcap benefits in iran constitute a source of rigorous information that attest to a generally positive appreciation of the introduction of nidcap. efficiency with a modest level of external funding, nidcap has had a positive leverage effect on promoting developmental care in iran. the introduction of nidcap helped four nicus adopt a family and baby centered approach and improved newborn care standards. it also stimulated biomedical research and scientific publications in this field.5-12 the absence of a logical framework for the program and a structured planning, reporting, and monitoring system has, however, hampered capturing progress and challenges. nidcap as a “pilot project” here has not been able to capitalize on and showcase learnings and good practices emanating from its implementation. sustainability overall, the mohme and the four hospitals have the capacity and means to maintain nidcap standards of care without external support. however, the high workload in the four nicus seems to affect the performance of health professionals, which may result in care variability and a gradual decline in nidcap care standards. from a health systems perspective, nidcap in iran has not matured enough to allow for scalability and to continue developing local capacities. conclusion iran undertook an innovative approach for the implementation of developmental care and nidcap across the country. a pilot project in four nicus was funded by unicef and supported by the moh. from a health system perspective, nidcap contributed to changing mindsets about neonatal care and reinforcing national capacities in developmental care. a major achievement is the positive impact on newborn caregivers. as part of broader efforts, nidcap helped transition from traditional task-oriented nicu care to newborn and family centred, developmentally supportive care in the four piloted nicus. the program, however, did not achieve all nidcap standards and did not meet initial ambitions such as the creation of a nidcap training centre in iran and establishment of centres of excellence. most nidcap certified professionals continue working in different nicus and represent an asset the health system can continue to leverage to relaunch nidcap both in pilot hospitals and other hospitals.1 references: 1. heshmat r, grau e. unicef and mohme team. external final evaluation of the “newborn individualized developmental care and assessment programme (nidcap), iran, 2013 – 2018". unicef and mohme. may 16, 2021. 2. als h. "newborn individualized developmental care and assessment program (nidcap): new frontier for neonatal and perinatal medicine". j neonatal-perinat med 2009; 2(3): 135-147. 3. kenner carole, jacqueline mcgrath, national association of neonatal nurses. developmental care of newborns and infants: a guide for health professionals. 1st edition. st. louis, mo: mosby, 2004. 4. the training of trainers (tot) model. national center for chronic disease prevention and health promotion. division of population health. https://www.cdc.gov/healthyschools/ trainingtools.htm 5. sefatbaqa s, et al. cue-based feeding and short-term health outcomes of premature infants in newborn intensive care units (nicu): a non-randomized trial. unpublished. https:// doi.org/10.21203/rs.3.rs-509074/v1 6. hasanpour m, alavi m, azizi f, als h, armanian am. iranian parent-staff communication and parental stress in the neonatal intensive care unit. j edu health promot 2017;6:49. 7.hasanpour m, farashi f, mohammadizadeh m, abdeyazdan z. the impact of a neonatal sleep care training program on nurses’ knowledge and performance in neonatal intensive care units. iranian j nursing midwifery res 2017;22:215-8. 8. baghlani r, hosseini mb, safaiyan a, alizadeh m, bostanabad ma. neonatal intensive care unit nurses' perceptions and knowledge of newborn individualized developmental care and assessment program: a multicenter study. iran j nurs midwifery res 2019 mar-apr;24(2):113-117. doi: 10.4103/ijnmr.ijnmr_54_18. pmid: 30820222; pmcid: pmc6390436. 9. soleimani f, torkzahrani s, rafiey h, salavati m, nasiri m. assessing factors influencing the quality of developmental care in neonatal intensive care units of tehran, iran j pediatr 2017; 27(1):e6733. doi: 10.5812/ijp.6733. 10. razavi nejad, m., heidarzadeh, m., mohagheghi, p., akrami, f., almasi-hashiani, a., eskandary, z. (2017). assessment of physical environment of iran’s neonatal tertiary care centers from the perspective of the neonatal individualized developmental care. iranian journal of neonatology ijn 8(4), 20-25. doi: 10.22038/ijn.2017.21258.1240. 11.razavi nejad m, eskandari z, heidarzadeh m, afjeh a, almasi-hashiani a, akrami f. assessing infantoriented care with developmental support approach in iranian nicus. j matern fetal neonatal med 2018 jul;31(14):1851-1855. doi: 10.1080/14767058.2017.1330879. epub 2017 may 31. pmid: 28508672. 12.eskandari, z., akrami, f., razvi nejad, m., almasi-hashiani, a., heidarzadeh, m. (2020). assessing familycentered care in iranian nicus from perspective of neonatal individual developmental care. iranian journal of neonatology ijn 11(4), 87-92. doi: 10.22038/ ijn.2020.47189.1808. dr. heidelise als with dr. marizeih hasanpour "iran undertook an innovative approach for the implementation of developmental care and nidcap across the country" 2023 • developmental observer • 25 n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 dear heidi, you wouldn’t believe the trip dorothy and i had to get to the meeting. we flew from newark, new jersey to copenhagen, denmark to riga, latvia, and then to stuttgart, germany. it’s so amazing that we are coming together in person after three years because of the pandemic. i’ve been so looking forward to reconnecting with everyone and renewing relationships, and yet, my joy and anticipation are caught and held back by the undeniable absence of you, heidi, our esteemed leader in all things nfi. there has been an exhausting effort by so many, especially those here in your native country to ensure a productive and successful meeting, to move forward as best as possible without you, fulfilling the mission of the nfi, and honoring all that is your legacy. deborah formally dedicated this meeting and our work here to you. as we were easing back into our in-person format this year, we have managed a hybrid format, which is pretty cool. we have 94 attendees in person plus 54 online for a total of 148 participants from 27 different countries. unusually this year, we began with the one-day open symposium looking at nidcap on the individual, the family, and the political level. our german hosts had planned well to create a comfortable and aesthetically pleasing environment. believe it or not, we are in a beautiful glass building of wala which researches and develops medicinal and cosmetic products. omg heidi, i thought i saw you at breakfast this morning, wishful thinking can be so powerful. in thinking about nidcap on the individual level, oskar jenni presented much optimism in terms of improvement of long-term outcomes due to the plasticity of the preterm brain in response to environmental stimuli. it was also a refreshing review of basic brain development. through ingeborg krägeloh-mann we were able to turn our attention to the various degrees of injury effects in light of the brain’s plasticity with fascinating examples correlating brain imaging to longterm effects. jacques sizun then really got us thinking about how to translate brain development research into practice. heidi, i couldn’t help remembering the infamous slide jacques showed so long ago with the suggestion that nidcap was the new magic tonic being sold in the old west of the united states. so many of us have grown so much in our understanding of this work and jacques has been such a strong advocate on such a national level for nidcap. unfortunately, professor brisch was unable to join us so we missed the twenty-year outcome presentation. dorothy vittner and i filled in with our approach toward nidcap enhancing the family experience. as usual, dorothy managed to get not only a quote from our dear friend john chappel but also a photo of cathy daguio. even though many people might not have known them as key nfi members who have died. maybe you have seen them heidi, i hope so. while attending nidcap on a family level we were all quite impressed with dominique haumont’s success in getting nidcap on a national level and she reminded us that you told her “the object is not to forget, but to remember to go on”. that was a lot easier when you were physically present with us heidi, but we will do our best. remember kelly jannsens reflections on the 33rd annual nidcap trainers meeting, bad boll, germany doi: 10.14434/do.v16i1.35779gretchen lawhon nfi president deborah buehler, phd “so many of us have grown so much in our understanding of this work” 26 • 2023 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 from leuven? she told us of their amazing journey in getting nidcap on to political agendas through the development of personal relationships. and, as you know heidi, we could not discuss nidcap, families, and a political agenda while in germany, especially without having silke mader share her passion and advocacy for this topic. honestly, i totally admire silke’s energy and zeal, but i feel inadequate in her estimation. we know political work is critical, but i am totally occupied with my clinical work. silke continues to be the most powerful family advocate i know. our one-day open symposium ended in a very fitting manner with a presentation by a family sharing their journey with their son mattis in newborn intensive care four years ago. they were very effective in communicating important messages to all of us. friday evening, we all turned our attention to you heidi. first i went on a tour of the wala medicinal herb garden. gloria mcanulty reminded me that it would be a good connection with you because of your son christopher and the camphill philosophy. then there was a wonderful experience created so that prior to dinner we had the opportunity to walk a candle-lit path with inspirational messages you had given to many of us. in fact, fifty nfi members shared how you inspired each of them. it was a beautiful evening; the moon had risen, and it was a quiet meditative atmosphere. i will admit that for several of us, we actively grieved. i hope you felt the huge outpouring of love from all of us. as our dinner was finishing up, deborah buehler gifted us with one of her wonderful slide show retrospectives of your life which ended on a positive note of your love for dancing, which was next on our agenda. good morning, heidi, it’s me gretchen, still in germany, without you. after what nearly everyone felt was a very successful day we then launched into our routine of accomplishments and overview of training. kaye spence and stina klemming did a really innovative approach by creating a video of each center’s report, both visually and in the representative’s own voice. i thought this method was fantastic! of course, you and frank were included in the national nidcap training center’s report and, by the way, the board approved sam butler as a nidcap trainer. she will do an excellent job as center director having learned everything from you, our best mentor. we continued our meeting with the quality assurance advisory council session on nurturing nidcap trainers with small group work sessions. thankfully graciela basso has agreed to continue as chair of the qaac. as usual, we had quite a few thought-provoking abstracts presented both in person and through zoom. you would love to know the new directions that nadine griffiths and natascia simone are taking with nurses’ perceptions as well as parental partnerships. we had a good section on breastfeeding and oxytocin from adi freund-azaria in israel and dorothy vittner’s ongoing work. additionally, we had good and interesting presentations on music therapy and on the quality of sleep. this morning both marzieh hasanpour, in person, and saadieh masri, on zoom, were able to present their work on empathy and developmental care in lebanon, respectively. our journal club continues and this year we had three articles including maternal bonding through therapeutic cooling, a small wins framework, and severe bpd. heidi, it was another very full day and then our hosts took us all to tübingen for a wondrous evening filled with a punting boat ride, an old city walking tour, and an incredible dining experience. the boats were like authentic primitive swan boats at boston public garden, and there were swans in the canal! i got the best captain; captain jonas and he even sat and played a jazz song on his guitar for us. i have to admit heidi, that the city walk was quite challenging for me, but so interesting and a perfect the 2022 trainers meeting was a hybrid with 94 attendees in person, and an additional 54 attending online 2023 • developmental observer • 27 n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 experience of the town. i can certainly see why you so enjoyed all the time spent training here. i ended up with a bit of a private tour with christian poets. the restaurant was just amazing, and we had a wonderful time with memories to last forever. so, heidi, this is our third day, and everyone is tired and we have the important work of the nidcap nursery program as well as the nfi membership meeting. you would have been so proud of sam butler for her presentation on using the nnp as a systems change agent tool. our nfi membership meeting had many of the usual tensions; some questions about the budget that just needed clarification. of course, whenever someone does not get elected, it is a little difficult because we want everyone to be satisfied. then, although it had just been an undercurrent, the tensions between fine and nidcap pulled us underwater a bit. with all our excellent clinicians and nfi members, surely, we can figure this out. if you can send us any good vibrations, please do, heidi. the best part of having a hybrid meeting was having some of our old friends such as elsa sell and roger sheldon join us. we had bjorn westrup with us on zoom throughout the meeting and at one point, he was walking his dog as he chimed in on an issue. heidi, all in all, this was an excellent although emotionally painful meeting for many of us. thank you for all you have given us. your loving friend, gretchen. some of the 54 remote attendees supporting hands nidcap care in the moment 6 • 2023 • developmental observer in the nidcap world, there is no achievement more rewarding than that of becoming an apib (assessment of preterm infants' behavior) professional and trainer. the apib,1,2 has a reputation for a detailed, challenging-to-learn yet unparalleled assessment, providing insight into the baby’s capabilities and voice.3 its approach and systematic elicitation of a baby’s responses to increasingly complex questions reveal optimal individualized information about their competencies. the apib provides a feeling of delight when it tells us about babies’ experiences. parents marvel at the insights elicited by the administration of the apib and what we professionals bring from the exam that helps them “see” their baby. learning and applying findings from administering the apib can be rewarding to the examiner, other professionals, and parents. only a few apib trainers are available to provide support and insights into the exam. aside from nidcap trainers, for whom reliability in the apib is a required step, or researchers, who must be reliable to conduct studies, few individuals are considered “apib professionals”. the experiences of those apib professionals who have either been through the process or are in the process of learning the exam can provide insights into how the training was valued, how they are using the apib, and what recommendations for changes in training and implementation they offer. a survey was developed and sent to a variety of professionals and trainees to request their expertise and recommendations for consideration of changes and next steps for the apib. the survey was created to know how learning the apib has influenced the activities in which apib professionals engage. methods survey development the “apib practice and training survey” was developed in consultation with four current apib trainers. the following categories were identified to determine how the apib is currently being used: the impact on clinical work; the impact on working with babies and families; the benefit to nidcap training; the use in research; and, the use in supporting other professionals. further categories included: the requirement to become a nidcap trainer; the impact on training approaches; and, recommendations for apib training for other professionals. further details about the content of the survey can be accessed through the author. data collection each apib trainer provided a survey monkey link for the survey to those whom they had previously trained or those currently in training. thus, the survey was a convenient sample to elicit the views of those with a vested interest in the apib and who were willing to share their insights. direct responses to the questions were followed by a request for comments to each of the question offered. data analysis results were analyzed using descriptive statistics and qualitative descriptions with representative quotes from the respondents included. the results provided valuable information regarding training, clinical application to the nidcap work, and recommendations for the future of apib work. assessment of preterm infants’ behavior: insights from the field and projections for the future joy v. browne, phd, pcns, imh-e nidcap senior master trainer and apib trainer, new mexico, usa with appreciation and reflections of my journey in apib training and practice with dr. elsa sell, my apib trainer so long ago. elsa was an early neonatology game changer, custom breaker, and consistent advocate of the nidcap work. she braved the medical system to learn and teach the apib approach even before there was nidcap. here’s to you, elsa! doi: 10.14434/do.v16i3.36566 nadine griffiths and infant during an apib assessment 2023 • developmental observer • 7 findings description of participants fifteen globally represented apib professionals and apib professionals-in-training responded to the apib survey. most of the respondents were apib professionals who were trained between six years and “over 20” years ago. although data were collected anonymously, based on those who were interested in receiving the results, respondents were from canada, europe, australia, japan, and the united states. for 70% of apib professionals, they reported it took between one and five years to become reliable. clinical application to use of the apib after apib reliability, over 50% described not using the apib clinically but 25% use it “a great deal.” overall, responses indicated that regardless of administering the apib and scoring it, the knowledge and insights from learning apib were valuable. the apib is used both in the hospital before the apib discharge and in outpatient follow-up settings. modifications are frequent, including using it as a part of the neurological exam, at the baby’s bedside, in discharge guidelines, using parts of the exam as appropriate and not scoring the exam. clinical application to work with babies respondents indicated that it was easier to identify the baby’s strengths and challenges, organization, and disorganization that informed their daily assessments and interventions. several commented on how it solidified their understanding of states and co-regulation and helped them understand the synactive theory better. learning the apib also helped them see the details and intricacies that were not readily apparent in observations. all babies, even those who have severe brain injury, show neurobehavioral strengths. these strengths only become apparent if one goes at the babies’ pace, and provides facilitation, and ‘trust the baby’. clinical application to working with families the themes of how to work with babies and families centered on how the apib helps guide parents to understand the communication of their baby and how to bring out the best in their baby. it gives rise to how to communicate with the parents about how to optimally support their baby. learning the apib also promoted the value of supporting families which leads to greater competence and thus better outcomes for the baby. [learning the apib helps me] to support them to facilitate for the baby to be attentive and by this for them to reach those important moments of interaction. and i can guide the family to make it easier for them to interact with the baby. impact on nidcap training over 70% of the respondents say that learning the apib has enhanced the training they provide to others. overall themes included that the apib helped to solidify their nidcap observations and integration of the subsystems. it also provided a sound foundation for training, feeling more secure about observations, and confidence in making recommendations for care. (with nidcap) i learned about the strengths and weaknesses of babies only through observation, but with apib, i think i was able to gain a deeper understanding of the strengths and weaknesses of babies by actually touching them. using the apib in research of those who have used the apib in research, 65% are not currently using the apib, but over 30% either have used, plan to use, or are using the apib in research. respondents commented on how unlikely it is that they do research using the apib due to lack of funding, that the apib is not well known in research communities, and that doctoral work is limited due to the time to learn and intensity of the training. use of the apib in supporting other professionals or students about half of the respondents use the apib in training or supporting other professionals. the use of the apib in training nurses, therapists, residents, developmental specialists, therapists, neonatologists, and others is ongoing for many of the respondents. however, the actual exam or scoring is not typically done as much as using the knowledge gained through apib training. i demonstrate the apib evaluation. this opens the student's mind to the amazing insight that can be gained with appreciating each infant's emerging strength and competence as well as vulnerability. entry to apib exam room in japan 8 • 2023 • developmental observer recommendations regarding the training process a question that often comes up for those who have been trained in the apib is the utility of the training approach. because becoming reliable in the apib is currently a requirement to be a nidcap trainer, we asked if they would learn the apib if it were not required. about half of the respondents reported that they would be likely or very likely to learn it and half said they would be unlikely or very unlikely to learn it. respondents reported that they were unlikely to learn the apib due to the cost and time investment of training without understanding the benefit of learning the apib. they also mentioned training challenges of coordination with the limited number of apib trainers, especially if a master trainer was also involved. some concerns were raised about the lack of normed scores that support its use after reliability was achieved. i also don’t think that there is enough understanding amongst our nidcap colleagues [who have not done apib] about why it is necessary to know apib to be a nidcap trainer. recommendations for changes in the training approach the majority of respondents recommended support for apib training. specifically, themes included the development of updated materials and access through virtual distribution. many recommended the use of videos as well as frequent access to trainers through virtual assistance between face-to-face visits. some recommended the use of adult learning principles, breaking down sections for which to become reliable, and “workshops” to encourage frequent discussions about learning the apib. recommendations to lower the reliability expectations for clinical and training purposes were made. i see the challenge of teaching and learning apib as the length of time between sessions with the trainer. in between there may be quite a bit of virtual work that can be accomplished. i think training videos for the apib would be great as an adjunct to the in-person trainer and trainee sessions and would speed up the process to certification. respondents commented on whether they would recommend learning the apib to others if it is not a requirement to become a trainer about 40% would recommend learning it to others and 30% would not. themes referred to role designation and the utility of those roles, and that it is an insightful, useful instrument for professionals in the nicu. however, themes again included that the apib is not as practical as other instruments, it is not recognized as qualifying babies for services, trainers may not be available, the manual needs revision and it takes too much time to learn. it is a very useful clinical tool for those who work in the clinical nicu. it would be very helpful for neonatal clinicians to see how challenging it is for very preterm infants to do "ordinary baby things" when they are around term age..... usually if the baby can feed/be "fed" then they are passed off as "neurologically normal" by the untrained clinician. however: unless they want it for personal development, or to use it post discharge, but in the u.s., it is not an exam that is recognized to qualify infants for services. and often as a baby becomes stable enough to do the apib, they are discharged! i think if you are already nidcap certified, then use the nidcap throughout the hospitalization, unless you have a large population of older babies who are stable enough. overall comments about the apib, the training process, and the use of the apib the apib is a useful if not essential instrument to understand the experiences of the baby and using it along with other approaches might be beneficial. training is seen by respondents to be an absolute asset to working in a nicu. however, training approaches and reliability levels could be improved. some recommendations were made for a shorter scoring process, and, throughout training, peer support is essential. i am curious as to how many trainers actively use the apib, and how often. i wonder if we could reconsider this requirement and maybe create an abbreviated version focusing on the systems scores or have trainers learn to administer and score the apib but not require reliability but some other measure of competency. ghent training group learning the apib: eveline van dyk, angeline parez, anneleis keymeulin, julie verfaillie 2023 • developmental observer • 9 summary and recommendations for the way forward for the apib the responses to this informal survey indicate commitment and in-depth thinking about learning and implementing the apib. the small number of apib professionals and apib professionals-in-training included in the survey likely does not represent the entire population of people trained in the apib. their comments, however, provide much food for thought for not only the current application of the apib for babies and families but also for professional researchers and systems thinking. overall, the respondents recommend training in the apib as it is a powerful instrument for understanding the baby’s experience and for helping others appreciate the intricacies of the baby’s behavior. to strengthen the process of learning this instrument and its clinical application and use, a number of recommendations were made. respondents strongly advocated for revisions to the apib materials and for making training more available and accessible by using video instruction, electronic materials, and periodic apib workshops. with these changes, expectations for advancement in the nidcap hierarchy will allow for wider dissemination of the apib and nidcap work, acceptance into wider clinical use, and applicability for research. the apib is the most powerful tool i know. it would enhance any clinicians understanding of human behavior. for medical clinicians, the apib would help them come from a model of emerging competence versus the classical deficit model in medical training. references: 1. als, h, lester, bm, tronick, e, brazelton tb. towards a research instrument for the assessment of preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. 1. new york: plenum press; 1982. p. 35-63 2. als, h, lester, bm, tronick, e, brazelton tb. manual for the assessment preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. 1. new york: plenum press; 1982. p. 65-132. 3. als h, butler s, kosta s, mcanulty g. the assessment of preterm infants' behavior (apib): furthering the understanding and measurement of neurodevelopmental competence in preterm and full-term infants. ment retard dev disabil res rev. 2005;11(1):94-102. doi: 10.1002/mrdd.20053 nidcap federation international board of directors and staff 2022–2023 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 18 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 currently, some kind of developmental care is to be found in most neonatal intensive care units (nicu), and the presence and participation of the parents are considered fundamental by neonatologists worldwide. the history of developmental care has rarely been studied. bibliometrics as a quantitative method is not only useful for research assessment purposes, but also for analyzing the history of science. reference publication year spectroscopy (rpys) was proposed to objectively analyze the roots of a research field.1 rpys has been used for example for neonatal pain.2 aim we investigated the historical origins of developmental care in newborn infants using rpys to reveal the most important publications for the evolution of this research field and to evaluate their relative importance within the field. methods a web of science search query combining infantand intervention-related synonyms was performed on february 2, 2022. the search retrieved 5,633 papers containing 7,248 distinct cited references. rpys analysis was performed on this dataset to identify the most referenced historical publications for developmental care in newborn infants. median deviation analysis identified peak publication years including the most cited historical references. landmark papers were defined as those belonging to the top 10% of the most frequently referenced publications for longer than 20 years. results the rpys peaks showed an early phase (1936-1986), during which infant development was studied and analyzed, leading to a conceptualization of developmental care for newborn infants. the following years (1986-2015) showed an explosion of interest in developmental care, highlighting two main programs: the newborn individualized developmental care and assessment program (nidcap) and the infant health and development program (ihdp) with many publications during those years striving to demonstrate the evidence of their clinical benefits. relevance to nidcap a major turning point was the conceptualization of the synactive theory of development by h. als in 1982. nidcap (and the ihdp) provided the basis of the broad concept of infant and family-centered developmental care, implemented at various levels in most nicus since the turn of the century. conclusion developmental care has become increasingly important through the implementation of two programs: nidcap and ihdp. published 2024, acta paediatricia https.//doi.org/10.1111/apa.16996 references 1. marx w, bornmann l, barth a, leydesdorff l (2014). detecting the historical roots of research fields by reference publication year spectroscopy (rpys). j assoc inf sci technol 65(4):751-764. doi:10.1002/asi.23089 2. anand kjs, roué jm, rovnaghi cr, marx w, bornmann l (2020). historical roots of pain management in infants: a bibliometric analysis using reference publication year spectroscopy. paediatr neonatal pain 2(2): 22-32. doi: 10.1002/pne2.12035. historical roots of developmental care in newborn infants: a bibliometric analysis using reference publication year spectroscopy smith m1, marx w2, anand ks3, haunschild r2, sizun j4, roué jm1 1 university hospital, brest, france, 2 max planck institute for solid state research, stuttgart, germany, 3 department of pediatrics, stanford university school of medicine, usa, 4 university hospital, toulouse, france doi 10.14434/do.v17i1.37077 of the axillary temperature target (36.5º 37.5º) was 7.4±13.5 and 19.7±27.8 min during skincubator and t-ssc respectively (p=0.002). initial temperature drop during skincubator care was smaller than in t-ssc (0.2º±0.1 vs 0.5º±0.3 p<0.001 n=35). six babies had picc lines or umbilical venous catheters, and one received phototherapy during skincubator care. no line dislodgment occurred. no baby had moderate hypothermia during skincubator care. five babies experienced moderate hypothermia of 35.5-35.9 during 6 t-ssc sessions. relevance to nidcap the skincubator may promote early ssc for very and extreme preterm newborns, aligning with the principles of nidcap by providing individualized, developmentally supportive care in the nicu. conclusions the skincubator can effectively create a humidified and warm environment on the human body for pn. the skincubator seems to be safe and may be superior to t-ssc in maintaining pn temperature, this may be clinically significant for extreme pn. further research is needed to validate these promising results and assess the long-term benefits of the skincubator in improving outcomes for premature neonates. 2023 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 t he target article (barr, 2022) brings the reader to a theatre in which the nicu is on stage. there’s a cast of characters, including neonatologists, surgeons, cardiologists, nurses, therapists, and parents. despite their shared purpose -to provide care for the babies -collisions occur on this stage, within and between the different specialties and interests represented by each group. continuing with our theatre metaphor, peter barr’s research aims the spotlight on the nicu nurses. they are the essential protagonists, whose central roles are played while providing continuous, 24/7 care to the babies and serving as the interface with parents. the nurses’ role is crucially important and can be exceedingly difficult to play. indeed, we learn that nicu nurses are the players most vulnerable to moral distress and burnout. yes, this is a morality play! if there were a script or a playbill, morals and ethics would pervade the lines. everyone in the cast is a moral being. each brings a personal moral code to the shared stage. we would note that the stage is part of a larger theatre in which actors, numerous creative specialists, stagehands and administrators all perform according to standards traceable to ethical codes and moral foundations. with so many players and priorities, it is inevitable that some situations evoke different and conflicting -but ethically based responses. hence, moral dilemmas arise. when such dilemmas go unresolved, accumulate, and reoccur, moral distress can emerge. like other forms of stress, it can become toxic. (barr’s definition focuses on institutional barriers to human action, but we recognize both institutional barriers and differences between individuals, are all morally driven.) in addition to moral distress, burnout occurs. there are instruments to measure burnout. barr used one with which he distinguished among three dimensions of burnout: demoralization, exhaustion, and loss of motive. barr has been sleuthing around emotional, personal, and moral dimensions of the nicu.1, 2, 3 his studies in australia and by others in italy and the u.s. have documented moral distress and burnout in nicu nurses. such effects are more prevalent and damaging to nurses than to other nicu professionals. overall, we see the deep questions unfold: how does the provision of life-saving and loving care become harmful to a professional provider’s physical and mental health? here, the plot thickens, becoming both drama and a detective story. methodologically, barr’s (2022) work is “state-of-the-art”. he collected survey data from a cohort of nurses in six, level 3 and level 4 nicus in new south wales, australia. there were 142 respondents, representing 24% of those eligible to participate in a standardized and validated written survey called the pediatric moral distress scale (mds-r), along with another scaling instrument aptly named the burnout measure (bm). in all, there were some 38 survey items, each answered with 5 – 7 “levels” or weightings. thus, each respondent provided a large set of values. the combined mass was voluminous and complex. barr then applied a series of computer-based analyses that addressed the statistical associations among the various survey elements. table 1 shows examples of events selected by barr that could conflict with a nurse’s morals or professionalism and lead to moral distress. think of each descriptor as an item in one of the surveys. then note the three dimensions of care: futile, compromised, and untruthful care. they were used as “factors” and appear as headings in table 1. each factor was tested for its association with each kind of event. you can understand a factor’s meaning from the items beneath each one. before the factor analysis is completed, each kind of event is examined in relation to each of the factors. the strength of these many associations are analyzed by calculating “regressions” which examine whether one variable changes systematically in relation to changes in another. when strong relations are found this way, it helps identify significant associations. this is a statistical method that can reduce a large and unwieldy set of numbers into a smaller set of “factors” which, can bring helpful order and clarification to an otherwise bewildering set of results. in the australian hospitals, about s c i e n c e d e s k – t h r o u g h a n e t h i c a l l e n s moral agents on the nicu stage target article: peter barr (2022) moral distress and burnout in nicu nurses, journal of obstetric, gynecologic, & neonatal nursing. 51, 461-449. https://doi.org/10.1016/j.jogn.2022.04.007 doi: 10.14434/do.v16i2.36239 jeffrey r. alberts, phd indiana university, usa, nfi science committee, associate editor for science david h. smith, phd indiana university, professor, director emeritus, poynter center for the study of ethics, usa 16 • 2023 • developmental observer one-third of the nurses witnessed forms of compromised care. reports of futile care were fewer, from about 20% of respondents. factor analysis revealed that moral distress from compromised care was more intense than from futile care and was associated with various forms of burnout, whereas futile care was associated with exhaustion. untruthful care was reported much less frequently (5% of respondents) but it predicted burnout demoralization. using the methods of factor analysis, barr quantified a spectrum of emotions and perceptions that were affected by nicu procedures and, in turn, could affect the efficacy of their work with babies, families, and colleagues. in the target article, barr elevates the analyses over that in past work, revealing a “multi-dimensional” structure to each of the factors. this is partly the “art” of the “science”. barr (2022) is advancing the field. he sees practical value in improving our understanding of the causes of moral distress. each step of improved understanding is a piece of evidence that can help identify precise changes can be enacted to reduce moral distress. when ethicists analyze a situation or evaluate a phenomenon, they often apply specialized conceptual tools. these tools enable them to organize their perceptions, to see patterns embedded in complex systems and identify the components that might be at play. sometimes the goal is to make interpretations, judgements, or draw conclusions. other times, the outcome is to pose key questions but leave it to others to answer them. complex, interactive systems, such as a nicu, are often analyzed with the concept of “agency”. all the players in a nicu are “agents”, i.e., someone who can influence others and events, or be influenced by them. nurses are arguably the major agents in the nicu, at least in the sense that they spend more time interacting with, and directly treating the babies. in addition, they are responsible for relating with and teaching the families. yet, the nurses’ agency is constrained by that of the parents and physicians. this may help bring into focus some sources of their moral dilemmas. barr eloquently noted that “nicus are ethically complex settings staffed by nurses with different personal strengths and vulnerabilities” (p.447). consistent with this, but more pointedly, is that nurses are moral agents. but there is a problem of balance within the constraints of their agency. the nicu nurses’ responsibilities are enormous in scope and importance. their authority, however, is not proportionate to their responsibilities. this is apparent from the elements listed in table 1. there is urgent need to understand the phenomena of moral distress, burnout and agency. if nurses suffer moral distress and moral distress leads to burnout, then we must address human suffering that arises in the service of others. if such suffering can be removed, mitigated, or prevented – it would be both ethical and practical to do so. it should be done. a nidcap perspective brought to the entirety of the issues raised by the table 1: events that might create moral distress in nurses futile care • initiate extensive life-saving intervention when it seems clear it will only prolong infant’s death • follow parents’ wishes to continue life support even though it is not in infant’s best interest; • witness parents’ receiving ‘false hope’ from doctors or nurses • help maintain hopelessly ill infant on ventilator because no one makes decision to turn it off compromised care • witness poor care quality due to poor communication among team • work with inadequate levels (of competence or numbers) of staffing • witness repeated unsuccessful performance of painful procedures on babies • assist a doctor who is providing incompetent care untruthful care • parents not given sufficient information to ensure informed consent • follow parents’ unwise choice of care due to fear of litigation • avoid action when staff colleague fails to report a medical error • take no action about an ethical breach due to pressure not to report it 2023 • developmental observer • 17 target article and this commentary would surely assert that the key elements include the family unit and the nurses. these agents must be brought to center stage. similarly, through nidcap observations and reports, the critical relations in the dynamic agency between nurses and parents would be in the limelight. physician-nurse relations and the crafting of responsibility-authority balance would be next to explore. these extrapolations imply systems change which, handled with ethical care, can facilitate the healthy evolution of nicu culture and practices. references 1. barr, p. (2017). compassion fatigue and compassion satisfaction in neonatal intensive care unit nurses: relationships with work stress and perceived social support. traumatology, 23(2), 214-222. https.//doi.org/10.1037/trm0000115 2. barr, p. (2018). the five-factor model of personality, work stress, and professional quality of life in neonatal intensive care unit nurses. journal of advanced nursing, 74(6), 1349-1358. https.// doi.org/10.1111/jan.13543 3. barr, p. (2020). burnout in neonatal care unit nurses: relationships with moral distress, adult attachment insecurities, and proneness to guilt and shame. journal of perinatal medicine, 48(4), 416-422. https.//doi.org/10.1515/pm-20190323 a mother's supporting handnidcap care in the moment 10 • 2021 • developmental observer neurodevelopmental supportive care in a rainbow nation south africa, the rainbow country at the tip of the african continent, is home to a population of 65 million people. it is a country that is divided into nine provinces, with 11 official languages and cultural and ethnic diversity. four major ethnic groups are evident in south africa with various sub-groups (department, 2019; sa-v; statista, 2021). in addition, the country comprises urban, semiurban and rural to deep rural areas. the birth rate for south africa in 2020 was 19.995 births per 1000 people (macrotrends, 2021), (1,171,219 births in total for the year 2019) (department, 2019). in south africa the preterm birth rate was 12.4% in 2014 representing one out of every ten births (chawanpaiboon et al., 2019). premature babies are born and cared for in various economic areas, but care may differ dramatically due to the available human and other resources. neurodevelopmental supportive care (ndsc) is a widely known but fragmentally implemented care model in the south african context. a variety of researchers from different disciplines conducted studies on various components of ndsc over the last two decades and this article aims to provide an overview of the development and adoption of ndsc in the south african context. the first training on developmental care was presented in 2001 in pretoria by professional nurse, sonja willemse, to a small number of healthcare professionals, consisting primarily of nursing professionals. thereafter some components were incorporated in neonatal care by individuals, however changing the culture to ensure that neurodevelopmental care became the underlying model of care in all neonatal units across the country, has proven to be challenging. while working in the nicu, i (the author) realised that we, as hospital staff take on the ‘ownership’ of the babies in our care, and parents are not empowered for their parenting role. during 2003, i explored parental needs while their babies were admitted to the nicu in south africa, with the aim to develop an early intervention program to restore the parenting role for parents while their babies were admitted to the nicu. after completing my master’s degree, i developed the first south african, evidence-based website for parents with preterm infants in nicu: www.littlesteps.co.za (2004). the idea was that we can provide an information platform where information can be updated quickly, and that each unit could have a computer for parents to access the information. this was before smartphones took over the world. the reality for both private and public sector was, that parents only had access to this information from private resources, such as a home computer or internet café. as a result, i started to present preterm parenting workshops for parents in my geographical area, in a format similar to that of ante-natal classes, but with the focus on preterm development and care. parents’ feedback was that they ‘learned more in four hours than in 60 days in the nicu’ and that ‘staff do not know this information’. i then realised that more must be done to ensure implementation of ndsc in all clinical facilities during 2005, little steps, took over the professional 2-day training workshop, expanded it to a 3-day workshop to include preterm feeding, and in 2006 registered the little steps premmies trademark and added an additional training: little steps premmie parenting facilitators. i believed that parents in every hospital should have access to information about their premmie’s development and care in a structured format, therefore training more presenters of the parenting workshop seemed like a global perspectives of developmental care south africa welma lubbe phd, mtech, rn, adv m, ne, bsoc sc professor, school of nursing science/ numiq research unit, north-west university, potchefstroom campus, south africa doi: 10.14434/do.v14i2.33002 little steps parenting website: www.littlesteps.co.za www.littlesteps.co.za developmental observer • 2021 • 11 solution. interestingly, enough parenting workshops were more evident in the public sector with the private sector taking much longer to adopt. during my work in the nicu and with parent support and healthcare professional training, i realised that having a website (at that point in time) was not the most effective means of communication. parents wanted to have something to read in their hands while sitting next to their baby in nicu. as a result, the full color illustrated book: prematurity – adjusting your dream (lubbe, 2008), was born and published in 2008. it has since proven to be a valuable resource for parents and professionals working with premmies and got feedback that it really carried parents through their nicu journey – feedback for which i am very thankful. the second edition of the book is currently in preprint format and should be available during 2021. awareness of developmental care grew during this time, with many healthcare professionals embarking on studies in this field but focusing on selected aspects of the care model some focussed on sensory integration issues, while others focussed on kangaroo mother care or parental support. developmental care was still not the underlying model used in the nicu, but rather a nice-to-have add on. however, in the process, some supporting products have been developed and manufactured within south africa, such as the little steps nest. i obtained my phd in nursing in midwifery and neonatal nursing from the north-west university, in south africa, and my dissertation was entitled the development of ‘best practice guidelines for neurodevelopmental supportive care of the preterm infant in south africa (lubbe, 2010). the first phase of the study was to identify the components of ndsc to determine how we could implement this in the south african context while programs such as nidcap were considered too expensive and time intensive for the south african context at this time. some important publications followed from this research and are used in clinical practice, such as the ‘integrative literature review defining evidence-based neurodevelopmental supportive care of the preterm infant (lubbe et al., 2012) and more recently the publication of ‘best practice guidelines: neurodevelopmental supportive care of the preterm infant – condensed guide for clinicians (lubbe, 2019). further research in the field of ndsc then funded by the national research fund (south africa) from 2012-2015 and implementation became more evident with post-graduate students from various universities and a variety of professional disciplines working on this topic. to highlight some work in this field, the following authors studied some component of ndsc. • hennessy (2006) obtained her phd on ‘facilitation of developmental care for high-risk neonates: an intervention study’ • nieder-heitmann (2010) conducted her study on ‘the impact of a sensory developmental care programme for very low birth weight preterm infants in the neonatal intensive care unit’. • lecuona (2012) completed her research on ‘sensory integration intervention and the development of the extremely low to very low birth weight premature infant. • du plessis-faure (2019) obtained her phd on ‘a model for nurses to facilitate mothers' caring of their preterm infants in an informal settlement, gauteng’. • in 2020 dr. alet rheeder obtained her phd titled: ‘implementation strategy for neurodevelopmental supportive care best practice guidelines in south african context’ (rheeder, 2019) and successfully integrated ndsc in a private hospital group were ndsc is now part of the auditing structure of care. • dr. lizelle jacobs completed her phd titled: ‘the implementation of a multi-disciplinary, neurodevelopmental supportive care training program related to preterm infants in the south african public health sector (jacobs, 2020) • dr. susan davis-strauss her phd titled: ‘developing a hospital-to-home transition programme to support south african parents of premature infants admitted into neonatal wards in public hospitals (davis-strauss, 2021). currently the aim is to support hospitals towards sustainable implementation of ndsc in their hospitals by means of a leadership program based on the kouzes and posner transformational leadership theory: the indesc study. this study has been funded by the south african medical research council since 2018, with a pause in implementation in 2020 due to covid-19. little steps nest public sector change 12 • 2021 • developmental observer participants currently include both public and private hospitals across the country. the initial phase of the study was the identification of champions in the participating hospitals to act as project coordinators within their facilities. these champions were then provided with leadership training based on the kouzes and posner leadership theory and thereafter they are supported for a period of 10 months to implement the various components of ndsc in their facility: 1) positioning, handling and kmc, 2) pain management, 3) neurosocial development, 4) environment and sensory management, 5) feeding and non-nutritive sucking, 6) breastfeeding in the nicu, 7) individualised, family-centered care, 8) transport, 9) procedures using ndsc, and 10) hospital-to-home. assessment of the status of ndsc is done before, midway and after the implementation of the various components, and champions experiences of the implementation is also determined to provide valuable information for scale-up of ndsc implementation. the indesc tool is used to determine the level of implementation of ndsc in participating units and provides a guideline on areas that require attention. for parents in the south african context there are some facebook peer support groups available such as neonatal buddies, littlelittleprem, parents of premature babies – cape town, to name a few. in addition, there is the little steps online parenting workshop (little steps, 2021) as well as in-person premmie parenting workshops in selected hospitals. implementation of ndsc in a country such as south africa that is so diverse in terms of resources and location, is a challenging undertaking. however, with healthcare professionals having the best interest of these tiny patients and their parents at heart, unexpected and impactful change can be seen across the country. references chawanpaiboon s, vogel jp, moller a.-b, lumbiganon p, petzold m, hogan d, ... laopaiboon m. global, regional, and national estimates of levels of preterm birth in 2014: a systematic review and modelling analysis. the lancet global health, 2019,7(1):e37-e46. davis-strauss, s. 2021, developing a hospital-to-home transition programme to support south african parents of premature infants admitted into neonatal wards in public hospitals. university of pretoria. department, s.s.a.r.o.s.a. 2019. mid-year population estimates statistical release p0302. https://www.statssa.gov.za/publications/p0302/p03022019.pdf date of access: 31 may 2021. du plessis-faurie, a.s. 2019. a model for nurses to facilitate mothers' caring of their preterm infants in an informal settlement, gauteng. university of johannesburg. file:///c:/users/21547173/ downloads/du%20plessis%20fourie%20etd.pdf.pdf hennessy ac. 2006. facilitation of developmental care for high-risk neonates: an intervention study. university of pretoria. jacobs l. 2020. the implementation of a multi-disciplinary, neurodevelopmental supportive care training program related to preterm infants in the south african public health sector. wits. lecuona er. 2012. sensory integration intervention and the development of the extremely low to very low birth weight premature infant. university of the free state. little steps. 2021. little steps online parenting workshop. https://littlesteps.co.za/online-parenting-workshop/ date of access: 7 july 2021. lubbe w. 2008. prematurity: adjusting your dream. little steps. lubbe w. 2010. best practice guidelines for neurodevelopmental supportive care of the preterm infant. north-west university. lubbe w. 2019. best practice guidelines: neurodevelopmental supportive care of the preterm infant – condensed guide for clinicians. potchefstroom, south africa: little steps. lubbe w, van der walt cs, klopper hc.. integrative literature review defining evidence-based neurodevelopmental supportive care of the preterm infant. j perinat neonatal nurs, 2012, 26(3):251-259. 10.1097/jpn.0b013e3182650b7e macrotrends. 2021. south africa birth rate 1950-2021. https://www.macrotrends.net/countries/ zaf/south-africa/birth-rate date of access: 31 may 2021. nieder-heitmann e. 2010. the impact of a sensory developmental care programme for very low birth weight preterm infants in the neonatal intensive care unit. stellenbosch: university of stellenbosch. rheeder a. 2019. implementation strategy for neurodevelopmental supportive care best practice guidelines in south african context’ potchefstroom: north-west university. sa-v, s.a. south africa languages and culture. https://www.sa-venues.com/sa_languages_and_ culture.htm date of access: 31 may 2021. statista rd. 2021. total population of south africa 2019, by ethnic groups. https://www.statista. com/statistics/1116076/total-population-of-south-africa-by-population-group/ date of access: 31 may 2021. the hospital after the renovation 2025 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 caci e 1, warren i 2 1 fine neonatal uk, 2fine neonatal uk, university college london hospital from teaching to coaching. enhancing communication with parents in the neonatal unit using coaching skills doi:10.14434/do.v18i1.40857 introduction with the implementation of infant and family centred developmental care, healthcare professionals are called upon to support parents in becoming confident caregivers of their children in the neonatal units and upon discharge. traditional teaching methods, even when gentle and respectful, often focus on instruction and hierarchy. transitioning to a coaching approach, which has its foundation in active listening and person-centred theory can more effectively build parents' confidence and autonomy, leading to a stronger partnership between healthcare professionals and parents. parents, with the healthcare professional’s facilitation, will be able to find their own way of parenting and caring for their children rather than fitting in with professional expectations. this approach aligns with up-to-date research showing that communication with parents can have an impact on their wellbeing. aims develop a foundational educational programme to train healthcare professionals in fundamental coaching skills to: • communicate effectively with parents ensuring parents feel heard and treated with empathy. • promote a team-oriented dynamic between parents and healthcare professionals, fostering a strong partnership. • provide practical tools for navigating challenging situations, boosting healthcare professionals’ confidence. method the coaching education programme is built around three key coaching skills: active listening, open questioning, and how to share skills and knowledge with a coaching mindset. a pilot programme was delivered in a three-hour session as part of a nidcap/fine masterclass delivered online on the 5th of july 2024. it was highly interactive to give participants the opportunity to practise the skills in a safe space. we explored the idea of shifting from teaching to coaching through discussion around two specific scenarios and identified three key coaching skills to practice. for each skill we discussed the concept, engaged in practical application, and concluded with a group discussion. feedback collection from participants in the pilot is in progress. we sent a survey following the event to identify relevance and areas of improvement. this feedback will be used to shape the programme for a wider audience of healthcare professionals as part of a foundational infant family centred developmental care (ifcdc) education curriculum appropriate for nidcap. the programme is collaboratively designed by healthcare professionals and parents and delivered by a certified coach with lived experience in nicu, actively volunteering in a level 3 hospital and working with healthcare professionals. a second parent with nicu experience will also contribute, ensuring diverse perspectives. results fifteen participants (parents, nurses, occupational therapists, physiotherapists, and researchers) all with experience of foundational education for ifcdc attended the pilot. this online masterclass was highly interactive, and all participants were engaged and contributed greatly throughout the session. preliminary feedback from the participants at the end of the session showed a high interest in the topic and a palpable need for training in coaching skills to enhance communication between healthcare professionals and parents. participants supported moving to the next phase of the "from teaching to coaching" project. input from attendees at the pilot will help design questions to evaluate outcomes once the final format is in its trial phase. conclusion this approach highlights the potential benefits of promoting coaching skills for parents and healthcare professionals in the neonatal unit by improving communication and fostering a stronger partnership. this is crucial for parents’ and healthcare professionals’ wellbeing and should enhance parents’ confidence in caring for and bonding with their children, ultimately resulting in better outcomes for pre-term children and families. relevance to nidcap coaching skills could be part of the nidcap training skillset. 2025 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 introduction trauma-informed developmental care (tidc) is essential to premature infants and their families hospitalized in the newborn intensive care unit (nicu). the core measures in tidc include five standards of care with skin-to-skin care (ssc) being central to their application.1 ssc has multiple benefits for the infant and its family 2 but it also creates a sense of safety and security to foster the development of trust and attachment, all in alignment with tidc principles.1 this is why the world health organisation (who) now recommends the practice of a minimum of 8-12h of ssc per day in the nicu.3 ssc is also considered to be the utmost co-regulation strategy to decrease stress and trauma as recommended by the newborn individualized developmental care assessment program (nidcap).4-5 nidcap aims to prevent complications in nicu and to maintain the intimate connection between parent and infant through collaborative observations of behavioural cues, individualized care plans and follow-up by nidcap professionals.5 aims/purpose our nicu is a 26 bed, open bay, level iii unit in montreal, within the french-speaking province of quebec, located in a socio-economically challenged area of montreal. about 50% of the patients are out born, sometimes from cities hundreds of miles away from montreal, which limits parental presence. in the process of becoming a nidcap training center unit and to foster parental presence and participation in care, we aimed to improve ssc session duration and frequency, as primary objectives for this project. however, as the training of our nidcap professionals advanced, a secondary objective imposed itself. the goal was to determine the effect of being followed by a nidcap professional in the context of the advanced practicum of nidcap training and subsequent follow-up after their certification, on the duration of ssc. over the last three years, we developed a new ssc multidisciplinary protocol, a ssc online training module, and ssc coaching sessions at the bedside for both parents and professionals. in addition, different tools to promote comfort and safety during ssc were purchased, such as zero gravity chairs, ssc wraps, as well as the use of leaflets and videos as parent resources. methods to monitor the progress, we documented parental presence, duration and frequency of ssc sessions, transfer techniques and positioning during ssc with bi-annual audits. those audits were developed and validated by a team of clinicians as part of our provincial community of neonatal nursing practice (cvp-neon@t) and are used in many nicus in quebec. the audits are always attended over a three-day period that includes both week and weekend days. results/findings over the span of three years, which included the covid pandemic, our primary objectives were met. the duration of ssc sessions doubled, increasing gradually and continuously from an average of 89 to 164 minutes (p=0.025). the frequency of ssc sessions tripled by our second audit, from 29% to 100% (p=0.025) and was steadily maintained in the following audits. this meant that every time a parent was present, and the infant was eligible for ssc, ssc occurred. this average duration of ssc increased to 258 minutes (p=0.025) when the infant was followed by a nidcap professional within an advanced practicum. some nidcap infants and their parents were having an average of 10 hours per day of ssc sessions. the impact of a developmental care skin-to-skin quality improvement project as part of our process of becoming a nidcap certified training center milette i, st-hilaire m, u-beaumier ca 1 neonatal intensive care unit, maisonneuve-rosemont hospital, montreal, quebec, canada doi:10/14434/do.v18i1.40883 relevance to nidcap individualized observations are the main element of the nidcap program, and are performed before, during and after the activities of feeding. professor heidelise als trained us how to do observations during caregiving. we combined these individualized observations in the promotion of oral feeding program and found that the very low birth weight infants achieved full oral feeding sooner, which promoted nursing care in our nicu. 14 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion our small sample (n=87, average=15 patients/audit & nidcap n=7, average 3.5 patients/audit) and non-statistically significant results are explained by the size of the nicu and we recently followed patients for the nidcap advanced practicum for a few months. despite this small sample, we were able to demonstrate that this project not only improved ssc duration and frequency in our nicu but also that nidcap professional follow-up almost doubled the duration of ssc sessions. relevance to nidcap these findings are relevant to nidcap, as they support previous similar findings in france.6 since parent-infant attachment is at the heart of nidcap, the importance of ssc as an essential strategy to foster behavioral cue understanding, co-regulation, and the principle of zero-separation cannot be understated. this study demonstrates that we can maximize this strategy with nidcap advanced practicum follow-up. references: 1. coughlin m, dewolfe t, fuller k. quality indicators for developmental care: a trauma informed conceptual model as an exemplar for change. in: kenner c, mcgrath j, editors. developmental care of newborn and infants: a guide for health care professionals nann national association of neonatal nurses. 3rd ed: wolters kluwer; p. 65-84.2003, isbn/ issn:9781975148393 2. conde-agudelo a, diaz-rossello jl. kangaroo mother care to reduce morbidity and mortality in low birthweight infants. cochrane database syst rev. 2016, (8):cd002771. doi: 10.1002/14651858.cd002771.pub4. 3. darmstadt gl, kirkwood b, gupta s, darmstadt gl, kirkwood b, gupta s, et al. who global position paper and implementation strategy on kangaroo mother care call for fundamental reorganisation of maternal infant care. the lancet. 2023, 401(10390):17513. doi: 10.1016/s0140-6736(23)01000-0 4. pierrat v, mitha a. contact peau-à-peau pour le nouveau-né prématuré ou de petit poids de naissance. in: sizun j, guillois b, tscherning c, kuhn p, thiriez g, editors. soisn de développement en période néonatale de la recherche à la pratique. chapitre 13. 2e ed. ed: lavoisier médecine sciences; 2022, p. 90-6. isbn : 978-2-257-20768-5 5. als h. theoretical persepective for developmentally supportive care. in: kenner c, mcgrath j, editors. developmental care of newborn and infants: a guide for health care professionals nann national association of neonatal nurses. 3rd ed: wolters kluwer; 2022, p. 35-64. isbn/issn: 9781975148393 6. pierrat v, coquelin a, cuttini m, khoshnood b, glorieux i, claris o, et al. (2016). translating neurodevelopmental care policies into practice: the experience of neonatal icus in france-the epipage-2 cohort study. pediatr crit care med. 17(10):957-67. doi: 10.1097/pcc.0000000000000914 aims the neonatal unit at university college london hospital is the only nidcap training centre in the united kingdom. we are committed to improving the collaboration between healthcare professionals and families. in 2023, we identified an opportunity for our multi-disciplinary team to work together to enhance this relationship by launching developmental care ward rounds. our quality improvement project (qip) had three main aims: 1. support parents as key nurturers 2. provide individualised care plans for infants and their families 3. ensure that staff feel valued as part of a wider interdisciplinary team methods key members of the neonatal team were identified as stakeholders for this project. these included an occupational therapist (nidcap trained), physiotherapist, speech and language therapist, psychotherapist, neonatal nurse and neonatal consultant with an interest in developmental care. the plan-dostudy-act (pdsa) model was used in project planning and execution. a questionnaire was sent to parents asking them for their views and recommendations. families were keen to participate and expressed a desire for an opportunity to share what they knew about their baby and to learn more about the different stages of their infant’s development. regular meetings were held to design a poster, parent leaflet and a bedside record sheet which includes an individualised care plan for the infant and family supported by the wider interdisciplinary team. the project was registered as a qip within maternity services. to ensure a clear and efficient referral and selection process, a standard operating procedure (sop) was developed and distributed to all staff. additionally, regular bedside education and engagement sessions were held with all members of the neonatal team. "this is the best ward round i have ever been a part of": implementing developmental care ward rounds in a tertiary neonatal unit in the uk. sammut a, lim am, jurikova m, furtado m, hicks ba. university college london hospitals, nhs foundation trust, london doi:10.14434/do.v18i1.40885 developmental observer 20 23 | v o l 1 6 | n o . 2 the official publication of the nidcap® federation international every single caregiver must enable parents to be parents not only cognitively within the framework of the rules but also intuitively . —frierer and elena pfeiffer (continued on p. 2)10.14434/do.v16i2.36194 inside family voices ................................................ 1 editorial .............................................................. 2 nidcap training centers .................. 6 worldwide educating, training, .............................. 8 recruiting, and retaining the best global perspective-australia ..... 12 science desk .............................................. 15 through an ethical lens congratulations to ............................... 18 dr bjorn westrup nidcap on the web ............................ 19 nidcap training centers .............. 21 our son mattis was born in tübingen, germany, almost five years ago. way too early at week 24. a small, tiny human being of 550 grams, but a whole person at the same time. it took us a while to understand that. when frieder was allowed to visit him a few hours after he was born, he returned to elena inspired. “he is so beautiful. it's a long way. but everything will be all right.” the third verse of the german lullaby “der mond ist aufgegangen” became mattis' baptismal motto. its truthfulness still touches us today: behold the moon and wonder why half of her stands yonder, yet she is round and fair. on the 1st of july 2018, our lives changed from one day to the next in a different way for each of us. giving birth so prematurely was the negative culmination of very worrying weeks with a lot of problems leading up to the delivery. the pregnancy had not lasted. from elena's point of view, being born extremely premature posed the greatest possible danger to her son's life. at first, she was just terrified. for frieder, former worries turned into the chance to take an active role in mattis' development, providing some relief to elena in a way. frieder was optimistic. our feelings about our son's early birth were different. however, we both felt confused, overwhelmed, and inexperienced. a multitude of emotions we were overwhelmed by our emotions. a new kind of fear, a new level of loss of control, a state of constant alertness, and, on top of that, the search for understanding from the medical staff, "are we right in the way we feel?" and, more importantly, the question of positioning oneself: too a small newborn, a whole person f a m i l y v o i c e s doi: 10.14434/do.v16i2.36197 by frierer and elena pfeiffer mattis pfeiffer, right, with his sister marlene 2 • 2023 • developmental observer f amilies are a great source of inspiration, and their approach enables professionals to adapt and use knowledge in different ways. frierer and elena pfeiffer whom we met at the nidcap trainers meeting in germany last year write a beautiful story of their journey through the nicu with mattis and illustrate how the nidcap approach made a difference to their journey. there is a lot to consider as you read their story. kylie pussell from miracle babies in australia tells us her story and how attending the international kangaroo mother care conference in madrid helped her champion the implementation of kangaroo care. as nidcap and apib training continues to spread we are challenged to see how we can continue to improve the training and the process. in this issue, roman chabba and juzer tyebkhan, a leader within the nfi ask if nidcap is ready for gen z. working with different generations can give us insight into how others see the world, and by listening to younger generations we can learn how to make changes. in this issue, we introduce a new feature – an ethical lens. jeffery alberts and david smith give insightful commentary on an article on moral distress in the nicu. we hope to make this a regular feature raising awareness of the many ethical issues facing parents and healthcare professionals. the nidcap training centers continue to inspire us in their work. natascia bertoncelli gives us insight into the development and work of the italian modena nidcap training center. i am happy to receive updates from any of the nidcap trainers centres as this column continues to celebrate the work of nidcap and apib. i would like to hear from the readership and membership on what features you would like to see in the developmental observer. of course, i would love to receive submissions on your nidcap work so we can continue to share the joy of working with newborns and their families. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia little optimism takes away hope and instead may paralyze you. too much optimism makes you vulnerable and afraid of too much hope and, consequently, too big a fall. access to our child was difficult early on. there were so many medical procedures and hospital protocols around mattis. so, we had to act counterintuitively. in addition, we naturally lacked medical understanding. added to this was the challenge of self-organization and logistics (e.g., pumping, visiting times) and of course the constant goodbyes. sometimes these were a relief, but more often they were dreadful. we also found it difficult to realize that touch, which is so important to us, can lead to breathing cessations. this situation was one example of so many dilemmas we found ourselves in. therefore, it takes time to adjust to the situation and to actively take action. especially if you already have experience as a parent of a first child. you feel positively or negatively the constant dependence on the nurses and doctors. another level of sensitivity for us as parents, it was helpful when the staff showed a psychological understanding of what we were experiencing. family voices, continued from p. 1 editorial learning to adjust to the new environment (continued on p. 3) cover photo used with permission doi: 10.14434/di.v16i2.36195 2023 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist and a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board we were especially helped by the nursing staff who understood that, with us, a soft approach was necessary. the nurses were empathetic, spoke an understanding language, and wanted to build an individual connection with parents. not necessarily only through medical competence, but as engaging, compassionate people. many nurses and doctors showed this level of sensitivity and helped us a lot, especially when nidcap came into play. the nidcap professional helped us to understand the medical framework and its effectiveness on the infant and additionally understood our personal framework as parents and individuals. the nidcap professional as a mentor parents need to be intrinsically motivated and accept that nidcap professionals have a special role as mentors in a way that parents who already have an older child are not used to. from our point of view, parents should therefore be psychologically met at their level and supported in different ways. for nidcapers this means that they have to establish their standing with their various stakeholders, find access and let parents have a say in what their baby tries to communicate to the world, and how it “ticks”. nidcap as a gamechanger after about a week of the greatest emotional challenges and of feeling overwhelmed more often than not, we became aware of nidcap for the first time. with nidcap came the change from having different observers of mattis to having only one person observing him who stayed by our side for the rest of our time in the nicu. a reference observer, so to speak. this was incredibly helpful and comforting to us. the nidcap professional was a knowledgeable observer who followed mattis and knew him well, and we accepted her as a mentor for us. we gained confidence through this nidcap professional, who gave us security, structure, and trust in the process. this nidcap professional got to know us and was able to relate to both of us in different ways. for frieder, she served mostly as an observer providing structure and chronicling important insights and events that revolved around mattis and his environment. with elena, she was a sensitive interlocutor who helped elena find her own intuition after the traumatic experience of becoming a mother. it helped to observe her 4 • 2023 • developmental observer and mattis together and helped elena learn to feel and realize her self-efficacy as a mother. in doing so, this helped to slowly build up the self-confidence needed to stand up for our child's concerns, on the one hand, and the implementation of the nidcap professional's recommendations on the other hand. this allowed us to function for mattis in our own way, but also for both of us in the best way for all involved. problem parents this self-awareness was important because our own actions could also lead to us being perceived as ‘problem parents’ on the ward. for some caregivers but explicitly not for all – mattis, the "king of the jungle", who needed a lot of attention, got company from his "jungle parents", who also demanded a lot of attention. parents who had to put up with the fact that some of the jointly developed nidcap recommendations were not taken into account by everyone involved according to the guidelines. standing up for a child's needs at the expense of one's own reputation, sometimes became a test of strength. 360° empowerment every single caregiver must enable parents to be parents not only cognitively within the framework of the rules but also intuitively. this means empowerment regarding the child and their surroundings. besides the goal that the child survives, it is equally important how the child survives. structured observation with its clear guidelines and support helps here. it is important to give everyone involved a good feeling by taking care of the child’s and the parent’s needs. then, they realize, it is being taken care of, but also, i can do something. this approach works wonders. self-confident actions that follow structured assistance ensure further self-confidence and further bonding with the child. however, it is important to remember that each person must be approached differently. the power of reading mattis' behaviors together with nidcap, we noticed after one observation, mattis was no longer hungry after cuddling. it seemed like he still needed something. our impression was that he still wanted to suckle something. that he might even be nursed to sleep. as a result, contact was made with the breastfeeding counselor. a visit was then very quickly implemented with the breastfeeding counselor which was successful, and things moved forward very quickly. it was a very liberating experience for us. because an observation was made, empathetic thought was given, and the right conclusions were drawn. mattis' delicate medical situation made individual caregivers refrain from taking this step towards breastfeeding. this is where nidcapers supported reluctant caregivers with empowerment. the child we have today is also the child we had in the nicu and the one we recognize today when we read through the structured nidcap observations again. just as he didn't like position changes in the past, he still has a hard time with major changes today. this means that, in our opinion, an individualized, observational approach to the child from the beginning is incredibly important and a great opportunity for the child to be seen as a whole person. the importance of family mattis as a healthy five year old 2023 • developmental observer • 5 learning a new role and thinking like a lawyer we had to learn a new role as parents in the nicu. to be an advocate for our child, we remember the quote from our self-selected caregiver "there is no other advocate for your child here but yourselves". embedding and teaching this fact was crucial. it enables a momentum of self-efficacy as the most important driver of resilience in the nicu. at the same time, the excessive demand of being able to perform this task seems too great, especially in such a medical environment, which is sometimes very foreign to non-professionals. having a nidcap professional by our side in this mammoth task was probably the decisive factor for us to stand up for mattis in the right places. we were not alone. in the nicu and in society, premature babies deserve a voice. for parents to support this, they must first find their own voice. without doubt and fear after 88 days, mattis came home, three weeks before the estimated date of birth. he is now a bright, cheerful boy who throws himself into life and is full of basic confidence. mattis is developing better than we ever dared to wish. he loves cars and role plays, music, and running. he is proud of his new bicycle with gears. and he enjoys the big family that has been so sensationally supportive all this time. for his great-grandmother's 98th birthday recently, mattis sang a song together with his sister. loud and full of joy. without doubts and fears. just as he entered this earth almost five years ago. we first had to learn this feeling from him. but now we know it. mattis is round and fair. a small newborn, a whole person. nidcap federation international board of directors and staff 2022–2023 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 2024 • developmental observer • 23 f a m i l y v o i c e s d efining moments can alter our life course in unimaginable ways. that moment came into my life on december 12, 2009, when my son giovanni was born prematurely at 30 weeks and three days gestation, weighing two pounds and eight ounces (1270 grams). little did i know that this experience would lead to a profound transformation, both personally and professionally, and that nidcap trained nurses would become my greatest teachers. before giovanni's birth, my life was consumed by a relentless pursuit of corporate success. i was entangled in the world of corporate insurance, where external values for performance awards overshadowed my well-being. the pressures of meeting unrealistic performance standards set by management eroded my self-esteem, pushing me to internalize the stress. my physical health began to deteriorate, and i became a hollow representation of myself. the word burnout was a word that had yet to exist in my vocabulary in 2009. the world health organization defines burnout as a syndrome arising from chronic workplace stress that remains unmanaged. burnout manifests through three dimensions: 1) feelings of energy depletion or exhaustion, 2) increased mental distance from one's job, encompassing negativism or cynicism towards the job, and 3) reduced professional efficacy.1 burnout transcends a mere reluctance to go to work; it is a persistent state leading to fatigue, disengagement, self-doubt, and a sense of being trapped and defeated. as a small business owner, my financial investment and liabilities, left me feeling trapped without exit. threats by my district manager to “ruin” me led to toxic burnout, an idea that the environment or circumstances contributing to burnout are physically and psychologically harmful or detrimental to one’s human nature. toxic burnout may occur because of a toxic work culture, unrealistic expectations, poor leadership, lack of work-life balance, or other factors that negatively impact a person’s well-being. toxic burnout while pregnant substantially impacted the growth and health of my unborn son. my obstetrician neglected to consider my concerns and downplayed the significance of my personal experiences, particularly regarding the potential adverse outcomes of toxic stress and burnout.2 throughout my seven-month pregnancy, numerous crises hindered any opportunity for excitement or joy associated with the experience. these crises ranged from a flood in our home and a fractured katie reginato cascamo is a champion. a classic overachiever that holds herself to the highest standards. good and noble. right up until it’s not. katie shares her story about not being heard professionally, the frustrations that go along with that, and what ultimately led to stress and trauma during her pregnancy. thanks to compassionate nidcap trained nurses in the nicu following the arrival of her son, katie’s voice was heard and respected. katie learned how to read the voice of her newborn son and how to support him. in her story, katie shares with us how her nicu journey had a transformative impact on her career path and contributed to her taking on a role as a parent leader in the nicu. katie is a shining example of the positive influence of nidcap. from corporate climber to nicu advocate: how nidcap transformed my life as a parent in the nicu katie reginato cascamo column editor: debra paul otr doi: 10.14434/do.v17i1.37082 giovanni and katie in the nicu 24 • 2024 • developmental observer hand to workplace bullying, resulting in a 55% reduction in income and the abrupt end of my career. i faced challenges such as jury duty, h1n1 swine flu, hand reconstructive surgery, and a clinical failure to address early signs of pre-eclampsia. on december 8, 2009, a blizzard blocked the emergency airlift helicopter's attempt to transport my unborn son and me to a regional hospital with a neonatal intensive care unit (nicu). the fear of being stranded triggered a freeze response, causing me to dissociate and complicating my ability to advocate for my health. my proactive decision to purchase airlift insurance months earlier proved lifesaving. i was transferred by ambulance to a fixed-wing plane, over a 5500-foot mountain, and then by ambulance to a regional health system known for its excellent neonatal healthcare. upon arrival, a team of nurses and physicians seamlessly coordinated my care, demonstrating a level of collaboration and skilled expertise that starkly contrasted with my own professional experiences. this pivotal moment not only instilled feelings of trust, but also planted the seed that would go on to shape my future role as a nicu parent leader. i underwent four days of bed rest, hopeful that reducing stress would support the extension of my pregnancy. during this time, we consulted with a neonatologist who detailed the various stages of the neonatal journey at 30 weeks, 32 weeks, and 34 weeks. this meeting proved instrumental in helping me visualize the possibility of an extended stay in the nicu, enhancing my reserves of courage and strength as i prepared for my son’s premature birth. the experience of trauma during pregnancy revolved around the absence of listening. distinguishing between hearing and listening is important. hearing involves the physiological processes of receiving auditory sensations through the ears and transmitting them to the brain. listening is a more psychologically complex activity that involves interpreting and understanding the significance of the auditory information.3 our clinical records document healthcare providers acknowledging the information transmitted in writing. the lack of action following this acknowledgment indicates a failure to truly listen and respond appropriately. my husband john, and my parents, jim and caroline carter supported me as primary caregiver for our 56 days in the nicu. our two months in the nicu led me to appreciate active listening that equipped me with wholehearted healing. our nicu nurses did not just care for giovanni; they became our mentors, guiding us step by step in caring for our fragile infant. our nicu nurses understood the voice of fear that came with this responsibility and provided individualized care that empowered me to overcome my uncertainty and gain the skills needed to care for giovanni independently. as my confidence grew, so did my ability to listen and empathize with others. our nurses listened to my story of professional burnout and toxic culture and helped me navigate my identity crisis that was rooted in my professional endeavors. the practice of listening, modeled after my nidcap trained nurses, became one of my pillars of leadership. our nurses not only taught me how to care for giovanni, but also how to recognize signs of stress in both him and me. i began to understand the value of wholehearted connection and used these skills to calm my son and myself. according to otto scharmer, ph.d., there are four types, or levels, of listening: 1. downloading: listening is limited to reaffirming what we already know, and new information struggles to break through our established understanding. 2. factual listening: we let the data speak to us and pay attention to information that contradicts our existing views. this requires opening our minds and setting aside habitual judgments. 3. empathic listening: we try to understand the situation from another person's perspective. this involves opening our hearts and using our feelings to tune into and appreciate someone else's point of view. 4. generative listening: we actively listen for the emergence of the best possible future outcome, creating a space for new and innovative ideas to take shape.4 (scharmer, 2018, p. 48) as i recovered from my traumatic birth experience, my nurse's unwavering commitment to listening played a crucial role in my ability to practice the skills i acquired to care for my son. our nicu journey gained attention in local media, prompting me to volunteer for our nicu and actively fundraise for its expansion (aho, 2010).5 the nicu transformed my heart into a space of healing and renewal, prompting a shift in my values. i no longer prioritized corporate success at any cost. f a m i l y v o i c e s giovanni in the nicu 2024 • developmental observer • 25 f a m i l y v o i c e s after completing our nicu journey, my focus shifted toward understanding the impact of leadership on shaping organizational culture. my personal experience as both a patient and a parent of a premature baby deepened my connection with nicu practitioners and heightened my interest in the dynamics of these relationships. long before the crisis of burnout in healthcare providers was as prevalent as it is today, my redefined purpose in life was to deeply care for nicu practitioners. the idea that a nicu parent could provide credible, professional leadership as an equal to physicians, nurses, occupational therapists, and technicians had yet to exist. intuition became my second pillar of leadership. in 2012, i began graduate school with the vision of a nicu parent leader reshaping health systems. though an unsubstantiated notion, my commitment to nicu practitioners, coupled with intuition learned from my nicu nurses, evolved over two years during my career transition. early exploration of the nicu parent leader role led to identifying crucial workforce skills, reinforcing the idea that nicu parents could apply pre-nicu experiences to serve maternal-infant health. i had a notion to empower nicu parents with transferable skills, fostering economic self-sufficiency beyond the nicu. at 14 years old, giovanni is 5’6” and 125 lbs (170 cm and 56.7 kg). he loves caring for others, a reflection of his own evolving recognition of his lived experience. giovanni has an extraordinary sense of humor and aspires to become a youtube star and professional video gamer. he attends an arts academy charter school that cultivates creative thinkers in visual and performing arts with a focus on career and technical education. as a ph.d. candidate in leadership studies at gonzaga university my dissertation explores the credibility of the nicu parent leader. as the founder and principal consultant of courageous steps, i aspire to exemplify profound listening skills cultivated during my nicu journey, offering valuable insights into this shared pain. at the heart of our collective journey through the nicu is the commitment of our nicu provider's practice of listening. nidcap trained staff impact babies and families. it was our nicu nurses' training in nidcap that led to my healing and courageous journey. the nidcap approach to observing and listening to babies and the parent's skills and developmental training extends beyond the nicu. for those of us who accept the invitation to serve as a patient leader and improve the way neonatal care is delivered, we have an incredible opportunity to pay nidcap forward for generations. references 1. burn-out an “occupational phenomenon”: international classification of diseases. (n.d.). retrieved december 7, 2023, from https://www.who.int/news/ item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases 2. coussons-read me. (2013). effects of prenatal stress on pregnancy and human development: mechanisms and pathways. obstetric medicine, 6(2), 52–57. https://doi. org/10.1177/1753495x12473751 3. bolton r. (1987). people skills: how to assert yourself, listen to others and resolve conflicts. simon & schuster. 4. scharmer co. (2018). the essentials of theory u: core principles and applications (first edition). bk, berrett-koehler publishers, inc., a bk business book. 5. aho j. (2010, january 8). early arrivals. herald and news. https://www.heraldandnews. com/top_story/early-arrivals/article_2fab2447-36c6-57a5-ac58-e4e8cd341dae.html giovanni (aged 13 years) and katie in january 2023 it’s easier and faster to reach a greater audience now, and that’s a good thing, but sometimes i miss the tactile experience of seeing and hearing the printing presses running, and holding the finished product. ks. what have you learned about nidcap during your years with the do? rc. everyone i have worked with at nidcap over the years has been wonderful, and they are a very caring group. as we rely more and more on technology, we lose some personal connectiveness and touch. what i have learned about nidcap is the practice of medicine, though rooted in science and technology (i.e. all the technology in a neonatal intensive care unit), can be practiced un-scientifically. after laying out many newsletters filled with many abstracts and research articles, i have no doubt the nidcap teachings are heavily rooted in science, but what i enjoy seeing is the touching/ caring/bonding, the un-scientific things that unite these parents and their children. and they all seem very grateful to have had the experience. ks. thank you, rob, for sharing these insights. i have learned a lot about you and look forward to working with you as the developmental observer continues to grow and to hear more about your creative ideas. (behind the scenes, continued from p. 22) 26 • 2024 • developmental observer i am from the children's hospital of fudan university where i am the deputy director of the nursing department of the hospital. i obtained a phd and now am a doctoral supervisor. i am also the chairman of the society of neonatal nursing of china medicine education association and have been engaged in neonatal nursing for more than 20 years. children's hospital of fudan university is a “stand alone” children's hospital. in 2017, it was approved as a national children's medical center. for over a decade, it has consistently held the top position in the list of best hospital specialties from fudan university and the best clinical disciplines from beijing university. the hospital serves as a diagnosis and treatment facility for difficult and critical pediatric diseases in china and as a training ground for top-level medical professionals. additionally, it possesses the ability for clinical research transformation in pediatrics. the hospital places great emphasis on the development of talents and technology, and highly values international exchanges. it maintains close ties with more than 40 international children's hospitals. the neonatal department of the children's hospital of fudan university was established in 1953. it has 200 beds, with a daily occupancy rate of over 160 inpatients. this department is among the first group of national clinical key specialties, serving as the specialized department for neonatal health care under the national health and health commission, an administrative government organization. it also serves as the national training base for neonatal specialists and is recognized as a key discipline of medicine in shanghai. additionally, the department serves as the referral center for critically ill newborns in shanghai. the key laboratories of neonatal diseases of the national health and health commission, the china newborn collaborative network (chnn), and the shanghai clinical quality control center for neonatal departments are based at the hospital. it is among the top neonatal medical centers, talent training centers, academic exchange centers, and scientific research bases in china. in 2022, approximately 10 million babies were born in china, with a prematurity rate that amounts to almost 7-8% of all newborns. all the babies are born in hospitals and doctors and midwives deliver them. the mothers spend two to five days in the hospital and receive training on how to breastfeed their babies, yet the rate of exclusive breastfeeding for six months remains low. newborn care is categorized as level 1-4 according to the international classification of levels of care. the average length of stay in the nicu varies depending on the institution. for us, in our nicu, due to the presence of numerous very premature infants, the hospital stay is somewhat lengthy. we are extending an invitation to parents to stay with their babies in the unit. an increasing number of institutions in china are participating in the transformation of the care model. the parents are capable of providing hands-on care for their baby. all the nurses possess a graduate qualification from a university or college. there is, however, no specific discipline for neonatal nursing in the university; neonatal nursing belongs to pediatric nursing. my nidcap journey in 2003, i started to learn nidcap through literature and became adept at understanding the impact of the environment on newborns, especially premature infants, as outlined in nidcap. we began to cover the incubators and protect the newborns in the nicu from light and sound to offer the most favorable environment for their growth and development. however, i didn't truly comprehend nidcap at that time. in 2007, i became the head nurse of the nicu, and realized that i had the responsibility and obligation to lead the nursing team in the nicu to provide the best possible care for the infants, to maximize their growth and development, to offer appropriate stimulation care, and to actively learn new care strategies. under the recommendation of professor cao yun in the global perspective on developmental care china xiaojing hu, phd, vice director, nidcap professional children’s hospital of fudan university in shanghai doi 10.14434/do.v17i1.37081 xiaojing hu and heidelise als 2024 • developmental observer • 27 department, i was fortunate to study nidcap with professor heidelise als. professor heidi came to china many times, and each time she taught us how to observe newborns, understand their needs, and provide them with the best support. i remember that our nicu environment at that time was still very rudimentary, but heidi's way of treating infants, behavior, and love amazed us. every time she observed the baby, she would stay for at least two hours, and although we were much younger and slightly tired, we admired her professionalism even more. i have immense respect for professor heidi and studied nidcap with her on and off for a considerable period of time. in 2019, i made a special trip to boston children's hospital for a few days of study, and subsequently engaged in an intensive course on nidcap observation and report writing with professor dorothy vittner for another few days. after returning from the united states, i continued to study nidcap online with professor heidi. i persisted for over a year in this manner and eventually obtained the nidcap professional certificate from professor heidi. i am extremely thrilled that heidi encouraged me to pursue my studies and become a nidcap professional. i hope to become a nidcap trainer and am following nikk conneman and dorothy vittner to learn about nidcap. i am currently sharing some basic knowledge of nidcap at china's newborn nursing conference and various other education programs. i hope to contribute to the future development of nidcap in china. the current situation and future expectations for nidcap in china due to the significant number of neonatal patients and the shortage of nursing staff, implementing the process of observation and report writing is challenging. in the nicu of our hospital, one nurse takes care of three to five infants every shift. i have thoroughly acquired the skill of observation and have produced numerous observation reports, yet it remains a challenge to carry out standardized observations in the current context in china by each bedside nurse. however, the act of observation is crucial; hence we opt for an observation without documentation approach, mandating nurses to conduct 20-30-minute observation of each infant during their shift. only through careful observation can we assess the developmental level and abilities of the infants and observe the response of the caregiver to the infants’ treatment. the caregiver can provide better care for the infants based on these observations. we acknowledge that it is not feasible for one nurse to handle the care of one infant per shift, but we are also working on enhancing the specific details of clinical care. we are working to involve more families in the care of newborns, with more parents engaging in this “kangaroo care” technique which helps to stabilize the clinical symptoms of infants. i am a postgraduate mentor, and the model of the synactive organization of behavioral development theory of nidcap also supports many studies on enhancing the stability of newborns in clinical practice which include family-centered care, kangaroo care, strategies to promote early full oral feeding, breastfeeding, and other related aspects. these specific measures can better contribute to the enhancement of infants' outcomes and the formation of stronger bonds between infants and their families. based on the results of clinical research, various nursing measures derived from the nidcap concept have demonstrated remarkable effects on newborns, with a particular focus on small premature infants. however, we still have a lot to learn from the professionals of the nidcap federation (nfi), and we still need to learn and communicate with neonatal professionals from various international hospitals. ultimately, we hope to apply what we have learned to benefit small babies. professor heidi, the board of directors of the nfi, and all the nidcap trainers have spared no effort to improve the prognosis of newborns, especially premature infants, worldwide through the nidcap method. it is the greatest kindness, and we also hope to fully implement nidcap in china to commemorate professor heidi and truly carry forward the nidcap approach to care.. kangaroo care visit at home 12 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 european standards of care1 state that infant and family-centred developmental care is defined as a partnership between parents and healthcare professionals. this relationship includes shared responsibility for infant care, collaboration, open information sharing, and joint decision-making. improving healthcare professional skills to support parental involvement during newborn care is highly recommended. aims design an improvement project to: improve the skills of nicu staff to establish a collaborative relationship with parents, support professionals in their relationship with parents, and encourage organizational transformations that facilitate and support the process. methods a multi-professional group (nidcap professionals, psychologist, pedagogue, unit leadership), in collaboration with parents’ representatives, designed the project that included the followings phases: • discussion within multi-professional focus groups on current values and strengths of staff in providing assistance in collaboration with parents (“where do we start from”, “what not to lose along the way”); future goals and organizational changes required to facilitate the process. • un-structured interviews with parents of discharged newborns, conducted by an experienced sociologist, to gather parents’ experiences, needs, and suggestions that could help the staff establish a more effective partnership. • feedback to the staff about the main topics emerged from the focus group discussion and from interviews with parents. scores on the empathic questionnaire,2 before and after project implementation, were used as indicators. results the main topic that emerged from the focus groups was that doctors and nurses shared awareness about the importance of family-centered care; moreover, both shared the value of cooperation and mutual support. poor continuity in family care was identified as a contributing factor to compassion fatigue and misunderstanding between parents and staff, possibly reducing the opportunity for a real partnership with families. twelve parents were interviewed. the need for continuity of care in newborns and family assistance was expressed by all parents, while only some of them would have wanted a more extensive involvement during their baby’s care in critical situations. discussion of the above topics led the staff to create two multi-professional working groups: the first dedicated to the implementation of organizational changes and the second aimed at designing simulation scenarios to be used during educational courses. the first group defined and implemented a primary nurse model; the second organized a simulation training using role-playing with the aim to increase sensitivity and communication skills in the nicu staff. statistically, the empathic median scores were not significantly different before (63 families) and after (27 families) the implementation of the project and reached in both cases the maximum value of six. analyzing the percentage of the maximum score in the items of the domain “parental participation” we observed a trend toward greater satisfaction in the items “we were encouraged to stay close to our child” and “nurses helped us to build the emotional bonding with our son”. relevance to nidcap parents’ involvement in infant care is the highest and most challenging goal of the nidcap approach. this goal can best be achieved by listening to and involving parents not only in baby care, but also in its organization; furthermore, a participatory approach from the staff could improve the implementation of the nidcap approach. conclusions this project starts from both parents’ and staff ’s points of view, under expert supervision. insights within focus groups helped us to reinforce the idea of the importance of individualized care, in a new organizational framework of care continuity. moreover, education by simulation training was organized to increase staff competencies in sensitive communication. references 1. efcni, european standards of care for newborn health 2. latour jm, duivenvoorden hj, hazelzet ja, van goudoever jb. development and validation of a neonatal intensive care parent satisfaction instrument. pediatr crit care med. 2012 sep;13(5):554-9 from parental involvement to a partnership with families in newborn care: an improvement project using the bottom-up approach doi: 10.14434/do.v16i1.35774 simeone n1, bestetti g2, soldati c3, fabbri f1, papa i1, grandi s1, china mc1, lazzari s1, montesi a1, ancora g1 1nicu, infermi hospital, rimini, ausl romagna, italy, 2research institute on health and practice (iris), milan, italy, 3nicu parents'association “la prima coccola, odv”, rimini, italy 2023 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 doi: 10.14434/do.v16i1.35773griffiths n1,2, foureur m3, spence k1,4, popat h1,5, hickey l6, sinclair l2 1 grace centre for newborn intensive care, the children’s hospital at westmead, australia, 2 university of technology sydney, 3university of newcastle, 4western sydney university, 5university of sydney, 6butterfly unit, the royal children’s hospital melbourne background nurses’ perceptions of developmental care (dc) practices have been researched globally for almost 30 years. yet, little is known of nurse perceptions of dc in surgical nicus. the stand-alone surgical nicu setting differs from general nicus. infants requiring surgery are often cared for by numerous treating teams, which may lead to a fragmented approach to care. they experience pain, stress, interrupted sleep and separation, with their family often required to travel or transfer between multiple facilities. this research on nurses’ perceptions of developmental care was undertaken in two surgical nicus, one with an embedded nidcap training centre (site a: 23-bed unit), and one with an alternate unit-based model of developmental care education (site b: 40-bed unit). aims • to evaluate nicu nurses’ perceptions and attitudes toward developmental care in surgical nicus. • to explore if the type of developmental care education program provided to nurses influences their perception of developmental care practices in surgical nicus. methods an electronic survey was distributed by email to 276 nurses permanently employed in a surgical nicu at two hospitals in two states of australia. the survey was modified with permission from family and infant neurodevelopmental education (fine) level 2 site assessment document and consisted of 36 questions. content validity was determined by two experienced neonatal nurses and a statistician. descriptive statics were used to examine trends in the responses. data is reported as frequencies and percentages, chi-square, and fisher’s exact test. results one hundred and seventeen (n=117) nurses completed the survey exploring their personal perceptions of developmental care and its application in the surgical nicu. response rates varied; 55% (site a), and 30% (site b) with a combined response rate of 42%. demographics differed between the sites for nurses’ years of experience and post-graduate qualifications. the majority of nurses in each surgical nicu acknowledged the benefits of dc for infant sleep (>93%), improving caregiving (>88%), and reducing infant stress (>90%). the challenge to consistently apply dc practices and the effect on nurses’ workload was similar across both units. the two units differed in the nurses’ perceptions of medical staff collaboration with dc (18% vs. 45%) p=0.006, nurses’ support of dc (47% vs 29%), access to dc education opportunities (55% vs 37%), the inclusion of dc education in organised study days (82% vs 68%), and the inclusion of dc in the orientation of newly employed nurses (81% vs 58%) p=0.021. a greater proportion of nurses at the non-nidcap site indicated that communication with families was difficult depending on the parents’ communication style (74% versus 51%) p=0.028 and was less likely to agree that their nursing peers offered support in the application of dc p=0.039. at both sites as nurses’ levels of dc education increased, they were more likely to agree that dc education was not consistently applied (p=0.032) in the surgical nicu. relevance to nidcap the introduction of nidcap in surgical nicus has been a challenge due to the specific population of newborn infants. various developmental care programs have been implemented as an alternate form of education in these units. these programs can support nidcap work through preparation and an understanding of developmental care principles by healthcare professionals. collaboration between the healthcare team is paramount if nidcap is to be seen as a model of practice in surgical nicus. conclusion: the survey results suggest surgical nicu nurses have a high level of awareness of developmental care and its positive impacts. despite differences between the units’ developmental care education programs, nurses collectively recognised the value of developmental care in reducing stress for infants and supporting families. does developmental care education alter nurses’ perceptions of developmental care practices in surgical neonatal intensive care units? 30 • 2023 • developmental observer a lthough neonatology is a technologically sophisticated medical field, its insights are too frequently slighted by parents, medical staff, and psychosocial support personnel. even today, neonatology lacks any kind of psychological specialisation, which has, for example, been a core component of paediatric oncology for many years. developing new modes of sensitive, individualized, attachment-based nursing, helping parents to bond with their baby born very preterm, implementing kangarooing for mothers and fathers, and 24/7 visiting hours should lead to a specialisation on psychological and trauma-related issues. furthermore, the medical and nursing staff should receive regular supervision as part of psychohygiene in order to foster sensitivity for the infants’ and parents’ needs, and to facilitate an attachment-based friendly atmosphere in the nicu. all this should focus on fostering secure infant-parent attachment development, despite the difficulties resulting from preterm delivery, complex newborn intensive care, and familial complications. our ulm study, which started about 20 years ago,1 was one of the first intervention studies, in which we focused on enhancing the development of attachment security in the preterm infant by supporting the parents through individual support, parent groups, and support during the transition from hospital to home. one aim was to mitigate previous unresolved issues of loss and trauma, as many parents had already experienced a stillbirth before they had to cope with a preterm delivery. we found that if the trauma of a previous loss has not been resolved, preterm birth triggers several trauma-related symptoms like avoidance of the baby, overanxiety, inability to psycho-neonatology: working with parents, preterm infants, and staff. the outcome of former preterm infants 20 years later doi: 10.14434/do.v16i1.35783 karl heinz brisch1, carmen walter2 1specialist in child and adolescent psychiatry, private medical school paracelsus salzburg, institute for early life care, salzburg, austria, and children’s hospital dr von hauner, department paediatric psychosomatic medicine and psychotherapy, university of munich, germany, 2specialist in education, formerly research assistant at the children’s hospital dr von hauner, department paediatric psychosomatic medicine and psychotherapy, university of munich, germany. carmen is a co-researcher with karl heinz brisch. karl heinz brisch reflection an important facilitator of bringing developmental care to the spotlight, was the publication of a report in march this year of the belgian health care knowledge center (kce)* on infant and family-centred developmental care (ifcdc) for preterm newborns. in the comprehensive report, the authors suggested recommendations for the implementation of ifcdc-principles to the fps, the minister and hospital boards. a group of experts (neonatologists and specialized nursing staff in neonatology) underlined the importance of these proposals. this collaboration between experts from the working field together with evidence from the literature, convinced policy makers of the necessity to establish a course of action and to continue the support of developmental care in neonatal settings. the opening ceremony of the nidcap training center in uz leuven, was the perfect opportunity to invite our ministers to the nicu to meet the parents of our vulnerable babies as well as the nursing staff personally, and to discuss why ifcdc is so important to sustain. the combination of the scientific report on ifcdc and the opening of the training center created momentum for current policy makers to finalize decisions that will result in the consolidation of both projects. we hope this will build a strong foundation on which to build, and to enhance chances for a better future of preterm born babies in belgium. references * detollenaere j, benahmed n, costa e, christiaens w, devos c, van den heede k. infant and family-centred developmental care for preterm newborns in neonatal care. health services research (hsr) brussels: belgian health care knowledge centre (kce). 2022. kce reports 350. d/2022/10.273/09. this document is available on the website of the belgian health care knowledge centre. https://kce.fgov.be/en m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 2023 • developmental observer • 31 m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 separate from the baby, and leaving the infant in the incubator for an extended period of time. unprocessed mourning of a previous stillbirth impeded the parental bonding process with the preterm baby. we further found out that in the control group – without any attachment-based intervention – healthy preterm infants had a greater chance of developing a secure attachment to their mothers, while neurologically impaired infants were more likely to develop insecure attachment. on the other hand, in the intervention group, infants had eight times (or 7.8) higher chance to develop a secure attachment to their mothers, even when they had neurological problems, which implies that their health status no longer predicted their attachment development. we followed this sample of very low-weight preterm infants (all <1,500 g birthweight; the infant with the lowest birthweight at that time in our sample that survived weighed only 320 g!) for 20 years and have collected data at several age points during their lives. the latest data sampling point for these formerly preterm infants occurred at about 20 years and included their mothers. to the best of our knowledge, ours is the first to investigate into late adolescence the longterm attachment development of teenagers born very preterm. we conducted a semi-structured interview that focused on attachment development with respect to their family and to their peers. in adolescence, peers are very important for emotional security and for the separation process from the core family. the most striking result was that the attachment status of 56% of former very preterm adolescents changed over time. more precisely, a shift was found from attachment security in early childhood (assessed 14 months postpartum, corrected for prematurity) toward insecurity, resulting in a high proportion of insecure-avoidant (36.9%) and to some extent disorganised attachment classifications (21.5%).2,3 however, attachment was unrelated to neonatal parameters, neurobiological risk, or intelligence. furthermore, in late adolescence, there was an association between psychological distress and behavioural problems in teenagers born very preterm, especially according to those symptoms classified as "preterm behavioural phenotype". these subjects had to be referred to psychotherapy.4 in summary, our results reveal that psychological burdens in late adolescence do not primarily arise from the physiological consequences of preterm delivery per se, but rather from feelings of loneliness and isolation, resulting, for example, from having people around, missing close friends, or non-participation in age-appropriate peer groups. our findings stress the urgent need to integrate psychosocial attachment-based support for the babies, parents, and staff as a baseline requirement from the very beginning. promoting attachment security by internalising representations of trust, reliable emotional support in times of need, and dampening the adverse effects of parenting on psychosocial outcome, should be taken into account. references: 1. brisch, karl heinz, bechinger, doris, betzler, suzanne, & heinemann, hilde. (2003). early preventive attachment-oriented psychotherapeutic intervention program with parents of a very low birthweight premature infant: results of attachment and neurological development. attachment and human development, 5(2), 120-135. doi: 10.1080/1461673031000108504. 2. walter, c. (2021a). bindung, bindungsbeziehungen und psychosoziale entwicklung von ehemals sehr kleinen frühgeborenen (< 1500g) in der späten adoleszenz — eine prospektive längsschnittuntersuchung. (dissertation zum erwerb des doktorgrades der humanbiologie). medizinische fakultät der ludwig-maximilian-universität münchen. 3. walter, c. (2021b). bindung, frühgeburt und deren langfristige auswirkungen auf die psychische entwicklung bis zur spätadoleszenz. in k. h. brisch (ed.), bindung und psychische störungen. ursachen, behandlung und prävention. stuttgart: klett-cotta. 4. walter, c., beese, j., bembenek, s., sieber, s., geis, l., & brisch, k. h. (2018). selfreported mental health problems among late adolescents previously born extremely or very preterm (ep/vp) and maternal attachment representation: an attachment-based longitudinal study from 320g in incubator to early majority. paper presented at the waimh 2018, rome. note: this paper was to be presented at the 33rd nidcap trainers meeting. unfortunately professor brisch was unable to present his paper. 5. riddell rrp, racine nm, gennis hg, turcotte k, uman ls, horton re, kohut sa, stuart jh, stevens b, lisi dm. (2015) non-pharmacological management of infant and young child procedural pain. cochrane database of systematic reviews, doi. org/10.1002/14651858.cd006275.pub3 6. axelin a, salantera s, lehtonen l. (2006) ‘facilitated tucking by parents’ in pain management of preterm infants— a randomized crossover trial. early human development, 82(4):241–247. doi.org/10.1016/ 7. alinejad-naeini m, mohagheghi p, peyrovi h. (2014) the effect of facilitated tucking during endotracheal suctioning on procedural pain in preterm neonates: a randomized controlled crossover study. global journal of health sciences, 6(4):278-284. doi: 10.5539/ gjhs.v6n4p278 8. obeidat h, kahalaf i, callister lc, et al. (2009) use of facilitated tucking for nonpharmacological pain management in preterm infants: a systematic review. the journal of perinatal and neonatal nursing, 23(4):372–377. doi: 10.1097/ jpn.0b013e3181bdcf7 9. shah ps, herbozo c, aliwalas ll, shah vs. (2012) breastfeeding or breast milk for procedural pain in neonates. cochrane database of systematic reviews, 12: cd004950. 10. vu-ngoc h, et al, & duong pdt. (2020) analgesic effect of non-nutritive sucking in term neonates: a randomized control trial. pediatrics and neonatology, 61 (1): 106-113. doi: org/10.1016/j.pedneo.2019.07.003 11. blass e, watt l. (1999) sucklingand sucrose-induced analgesia in human newborns, pain, 83(6): 611. doi.org/10.1016/s0304-3959(99)00166-9 12. kassab m, anabrees j, harrison d, khriesat w, chen s. (2017) sweet taste drinks effects on reducing injection pain and associated stress among infants: a meta-analysis of randomized controlled trials. open journal of pediartrics and neonatology, 1(1): 1-12. 13. beauchamp tl & childress jf. ( 2013), principles of biomedical ethics, seventh ed., new york: oxford university press 14. litmanovitz i., (2021) combined multimodal cerebral monitoring and focused hemodynamic assessment in extremely low birth weight infants – potential benefits or potential costs? developmental observer 14(2): 18-20. doi: 10.14434/do.v14i2.33001 15. deshpande p, jain ríos dr, bhattacharya s, dirks j, baczynski m, mcnamara kp, hahn c, mcnamara pj, shah p, guerguerianb am. (2020) combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants. neonatology, 117:504–512. doi: 10.1159/000508961 (continued from p. 18) 12 • 2023 • developmental observer my story in 2004 i delivered twins at 25 weeks gestation, and this changed my life forever. after years of struggling with fertility issues, miscarriages and then being diagnosed with cervical incompetence i delivered my first surviving daughter at 30 weeks, following 8 weeks in hospital on bed rest. two years later after three weeks of bed rest in the hospital, i had an emergency cesarean section to deliver my twins at just 25 weeks gestation. in 2005 i was asked to attend a meeting with other parents to explore the establishment of a parent support network. i jumped at the idea as my second surviving daughter was home with us, but we were also dealing with the grief and loss of our son after two days of life. as hard as it was, i knew that we needed to make more positive changes for families experiencing such a life-changing experience. even though i didn’t see it at the time, my experience and courage to share my personal story could help so many other families. resilience is something you reflect on afterward, not realizing at the time what it is. i just remember trying to breathe and having some type of normal function to care for my two daughters. many years later i do believe that in some way i knew my experience could help other parents and sharing my heartbreak could change the future of care for babies and families. as a result of my personal experience, i am the co-founder of miracle babies foundation, australia’s leading organisation for parents that supports premature and sick babies and their families. since 2017 i have been ceo, leading the organisation to deliver our vision of ‘better, healthier outcomes for newborns and their families challenged by prematurity or sickness.’ an invitation in november 2022, i was invited to attend the xiii international kangaroo mother care congress in madrid spain as a parent representative. i always felt that we could do kangaroo care better in australia. this important healthcare congress included two days of learning through workshops with other parent representatives and clinicians from across the globe. i was so impressed with the two days of conference presentations with such inspiring work being delivered saving lives right around the world. also, in november 2022, in line with world prematurity day, the world health organization (who) announced its advice for immediate skin-to-skin care for the survival of small and preterm babies. who advises immediate skin to skin care for survival of small and preterm babies the guidelines advise that skin-to-skin contact with a parent – known as kangaroo mother care, should start immediately after birth, without an initial period of time in an incubator. this marks a significant change from earlier guidance and common clinical practice, reflecting the immense health benefits of ensuring caregivers and their preterm babies stay close, without being separated, after birth. ‘preterm babies can survive, thrive, and change the world – but each baby must be given that chance,’ said dr. tedros adhanom ghebreyesus, who director-general. ‘these guidelines show that improving outcomes for these tiny babies are not always about providing the most high-tech solutions, but kylie and scarlett global perspective on developmental care inspiring global outcomes – kangaroo mother care kylie pussell, co-founder miracle babies foundation, australia doi: 10.14434/do.v16i2.36198 2023 • developmental observer • 13 rather ensuring access to essential healthcare that is centered around the needs of families.’ the xiii international kangaroo mother care congress was hosted by international network in kangaroo mother care (ink) and featured presentations from colombia, spain, the usa, philippines, canada, norway, sweden, south africa, vietnam, france, india, ethiopia, qatar, and cameroon. a truly global forum. the presentations were inspiring! there is so much good that can come from kangaroo mother care and immediate contact after birth that benefits both baby and mum, dad, and partner. that this human connection can save hundreds of thousands of babies’ lives every year across the world, highlights the miracle of life and love. i was touched by the open and emotional presentation of the efcni (european foundation for the care of newborn infants) chair and co-founder, silke mader who emphasized the importance of parent involvement and the primary caregiving role for parents. she encouraged clinicians across the globe to partner with parents and parent groups to continue improving the care for babies and parents. a presentation delivered by the world health organization noted that the current impact of kangaroo mother care globally was 5% coverage which resulted in the saving of 10,000 babies’ lives a year. to add impact and scale up implementation research to a 60% coverage would result in the saving of 150,000 babies’ lives per year and at the high end of the potential with 80% coverage, would prevent 400,000 babies from losing their fight for life each year globally. this was really amazing to hear of such an impact of parents’ love and touch on health outcomes for their babies. the who also shared that 20 million, 15% of all births worldwide are babies born with low birth weight, 95% of these babies are from lowand middle-income countries and heartbreakingly account for 70-80% of neonatal deaths. https://www.who.int/publications/i/item/9241590351 parents involvement the who guidelines bring home the importance of parents’ involvement and touch immediately after birth and it is great to see so much research and improvement in zero separation for families from those at the ink congress and beyond. when my twins were born at 25 weeks in 2004 via emergency cesarean section, their resuscitation and stabilizing were the priority. on day two of life, my son marcus passed away from his extreme prematurity and i never got the chance to kangaroo care with him. when scarlet was eight days old, i was offered to hold her, it wasn’t kangaroo care or skin to skin and it was only for a few moments. as scarlet grew stronger, we did get to have kangaroo care with her, but it should have been earlier. knowing what i now know about the benefits of kangaroo care and this life-saving connection, i want all parents to feel educated on kangaroo care and advocate for their baby to have this very special time and ask for zero separation at birth. more touch, love, and bonding in those early moments can really be lifesaving and improve outcomes for babies and families. kylie at the conference in madrid networking with international colleagues dr samia rizwan from pakistan, kylie, mandy daly from ireland and dr pierre kuhn from france https://www.who.int/publications/i/item/9241590351 14 • 2023 • developmental observer in australia, we celebrate international kangaroo care day on 15th may each year and host our annual kangaroo-a-thon with participating hospitals to raise awareness and education about kangaroo care. this day was established by yamile jackson, founder of the zaky hand and mother to zak, another passionate movement for kangaroo care. networking we need to globally work together to share experiences and outcomes to increase education and access to kangaroo care. it can all play a part in improving parents’ mental health and confidence and in some circumstances can save a life. in attending the ikmc conference in 2022, i was able to meet so many other clinicians and parents passionate about improving education, awareness, and saving lives. these networking connections are invaluable for all countries to learn from each other and help all newborns have the best opportunities from birth. i look forward to a nicu world where all babies and families are cared for together. where parents feel like parents right from the start. and all babies no matter where they are born can have a better start to life. in helping more babies and families have earlier access to kangaroo care and be more involved in their baby’s neonatal journey as the primary caregivers, we can work toward zero separation, saving more lives and creating better, healthier outcomes. to find out more about kangaroo mother care and skin to skin contact please visit kangaroo care awareness campaign miracle babies many participating countries issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2023. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. the nfi thanks its current sponsor, dr. brown's medical, for their continued support. our sponsor https://www.miraclebabies.org.au/content/kangaroo-care-awareness-campaign/gjyjfc https://www.miraclebabies.org.au/content/kangaroo-care-awareness-campaign/gjyjfc 2025 • developmental observer • 19 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 introduction inviting parents to bring their lived experience to the education of neonatal healthcare professionals has proved to be both a revelation and an inspiration. since 2017 we have been developing active roles for parents as part of the family and infant neurodevelopmental education (fine) foundational education faculty. this began in hungary and romania with parents as organisers, co-coordinators and translators, but it soon became apparent that their lived experience and their passionate interest in improving service for children and families in neonatal units could be captured, extending their role to explore family experiences in a unique way. as they became familiar with the programme, they became very willing to take this on with confidence and we recognised the unique contribution their knowledge and experience brought to the validity of the training. in the last year and a half, we have recruited and prepared parents for the uk faculty. recruitment was through personal contacts and with the help of bliss, a national charity that supports neonatal units. our first recruits have brought a wealth of other professional skills to our team as well as their experience as parents. aims • to bring lived experience into the training space • to highlight the importance of communication with parents in the newborn intensive care unit (nicu) methods • parents who are not currently in the middle of the neonatal experience, who can participate and respond with knowledge and hindsight, are invited to be part of the faculty for foundational education programmes. • they provide continuous insights during training days, help to shape the curriculum, and with experience and guidance lead some of the topics. • they provide a space for discussion and reflection, and opportunity to ask questions in more intimate group workshops. • the programme is semi-scripted so that the boundaries of discussion are contained. • in recognition of the emotional energy that this work demands and the need to make it sustainable, professional psychological support is provided for parents who participate and, in addition, supervision and support from senior faculty is provided. results/findings • through the participation of parents as faculty several aspects of the foundational education programme have been changed and improved, including the kind of language used and introduction of coaching techniques. • faculty report on the impact that parents’ contributions have had on their way of teaching, how it has changed their perspective of their practice, and their perceptions of how the course has benefitted from the addition of this shared lived experience. • participants report that they highly value the powerful contribution of parents lived experience. • parents feel that by sharing their experience and the values of the fine programme they have an impact on improving the care for preterm babies and therefore their future outcome. furthermore, to be able to shape and improve the experience of parents on neonatal units gives the parent faculty members an enormous sense of fulfilment. conclusion this approach highlights the benefits of drawing on lived experience. it enhances the value of foundational education particularly when this experience is also drawn on to shape the way training is delivered. other ways in which this experience may be extended to help healthcare professionals gain skills in understanding and communicating with parents are being explored. relevance to nidcap this approach could be integrated into the nidcap training programme to deepen the understanding of the training participants with regards to the lived experience of the parents and carers. integrating parent lived experience into training programmes for healthcare professionals durm s1, warren i2 1parent faculty, fine neonatal uk. 2neonatology, university college london, uk. fine neonatal uk. doi: 10.14434/do.v18i1.40894 16 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 background parenthood can be overwhelming and anxiety generating for all parents including new ones. this is more pronounced for parents whose newborns are admitted to the newborn intensive care unit (nicu). in this environment, parents face complex information and are required to learn new skills to care for their infants, which can heighten their stress levels. parental education in the nicu may help prepare parents for home transition, boosting their confidence and knowledge and reducing their stress. aim/purpose to evaluate the effectiveness of education sessions in enhancing knowledge and attitude among parents of infants admitted to the nicu of a tertiary care center in lebanon. methods since august 2016, parent education sessions were held in the nicu as part of the unit's nidcap implementation process. parents’ readiness to care for their infants was assessed during their hospital stay and post-discharge. a parent education taskforce was formed to address parents' knowledge needs and readiness. the taskforce included a neonatologist, nidcap professionals and nicu nurses. baseline information was collected from ten nicu parents to identify topics of interest. presentations were prepared on kangaroo care, breastfeeding, infant behavior cues and discharge process. other topics were added later based on parents’ feedback. individual and group sessions were conducted, in person or online monthly and as needed. we took advantage of events’ celebrations like kangaroo care day, world prematurity day, and breastfeeding week. the sessions were interactive mostly when held in person. in january 2021, we began monitoring parental knowledge before and after each session. the knowledge questionnaire included ten true/false questions about the topic of discussion. open-ended questions were used to assess parents’ needs, expectations and attitudes toward infant care. results over the last three years, 105 parents attended the sessions. the average knowledge score increased from 79% to 92%, reflecting a 16% improvement. parents actively engaged in discussions, demonstrated keen interest in the content and acknowledged the sessions' significance for them. in the open-ended questions, parents reported that the educational sessions will change their misconceptions about breastfeeding and kangaroo care and equipped them with essential knowledge. one parent added ‘i expect to have a wider knowledge regarding the "premature baby phase" in general and also to get ready emotionally and physically to take my baby home’ and another parent mentioned ‘very valuable information to know about newborn care’. parents found the sessions particularly helpful when they addressed practical concerns such as storing breast milk, understanding their baby's behavior cues and post-discharge care. conclusion parent education sessions in the nicu play a pivotal role in nurturing a positive caregiving experience and promoting better health outcomes for both infants and parents. overall, the knowledge gained from these sessions empowered parents, giving them a stronger sense of assurance in managing their caregiving responsibilities and preparing them more effectively for the transition home. challenges remain in ensuring participation of all parents. future directions include leveraging new technologies such as mobile applications. additionally, involving former nicu parents to share their experience and perspectives during those sessions may be more welcoming. relevance to nidcap parental educational sessions align with the nidcap philosophy of promoting family-centered care and providing individualized support to parents, ensuring they are well prepared to care for their infants. education sessions improve knowledge and attitudes of parents in a newborn intensive care unit within a low-income country youness n, masri s, abdel nour g, charafeddine l american university of beirut, lebanon. doi:10.14434/do.v18i1.40888 4 • 2021 • developmental observer kangaroo care practice during covid-19 pandemic in a newborn intensive care unit of a middle-income country charafeddine l1, masri s1, maalouf f1, abi farraj f2, haidar m3, hamoud s3, chemali z3 1 department of pediatrics and adolescent medicine, american university of beirut medical center, beirut, lebanon 2 medical student at the faculty of medicine, american university of beirut medical center, beirut, lebanon 3 nursing services, american university of beirut medical center, beirut, lebanon aims kangaroo mother care (kmc), the practice of skin to skin contact provided to preterm infants in addition to breastfeeding, supports parents and leads to earlier discharge from the hospital.1 kmc is recommended for all clinically stable infants in the newborn intensive care unit (nicu) having been shown to improve infants’ physiological stability, weight gain, mother-infant bonding, exclusive breastfeeding rates and newborn survival).2-5 in many nicus, the covid-19 pandemic has potentially jeopardized the practice of kmc where restricted visitation policies were adopted. nevertheless, the american academy of pediatrics and world health organization (who) continue to recommend kmc and breastfeeding during this pandemic while taking appropriate precautions.6,7 the aim of the present study is to report the consequences of covid-19 related visitation restrictions on the practice of kmc for infants ≤34 weeks during implementation of a quality improvement (qi) project promoting kmc in a nicu of a middle-income country. methods the qi, followed the plan-do-study-act (pdsa) methodology, and was initiated in october 2018 in a level iv nicu. the multidisciplinary qi team consisting of four nicu nurses, a neonatologist and a developmental care coordinator led the kmc implementation project. to increase awareness of kmc benefits among staff and parents, the team used an arabic translation of the march of dimes “close to me” education materials.8 the team held parent and staff education sessions, supported nicu nurses and parents in the practice of kmc, and posted kmc related tips in each nicu room. documentation on kmc was noted to be deficient, which was targeted in one of the interventions. the kmc practice was observed from january 2020 to august 2020. covid-19 related participation restrictions were observed from april to august according to the hospital directions. the restrictions varied over time starting in march. at times, restrictions included prohibiting skin to skin and direct breastfeeding. during visits, each kmc session was considered as one occurrence per infant. restrictions, variations and interventions over time are listed in the control chart. (fig.1). doi: 10.14434/do.v14i1.31810 sum of kangaroo care sessions for all infants per week figure 1. control chart developmental observer • 2021 • 5 results the mean number of kmc sessions for infants ≤ 34 weeks was 2.5 sessions per month prior to visitation restrictions. after staff education, parent support sessions and later staff documentation, and after removing the restriction (june–july) the average sum of kmc increased to eight sessions per month. conclusion despite the participation restrictions, the kmc rate increased with time mainly due to parents’ determination to visit their infants and spend this time more efficiently. the interventions performed by the kmc qi team seemed to improve the rates of kmc at our institution especially during the adverse times relating to the covid-19 pandemic. lessons learned many inevitable measures affected this qi process namely the variation in the restriction measures and scarcity of nurses’ documentation. these are two main challenges that need to be addressed in the next pdsa cycle. references 1. world health organization, dept. of reproductive health and research. kangaroo mother care: a practical guide. isbn: 9241590351, who reference number: ws 410 2003ka. https://www.who.int/maternal_child_adolescent/documents/9241590351/en/ 2. campbell-yeo m, disher t, benoit b, johnston c. understanding kangaroo care and its benefits to preterm infants. pediatric health med ther. 2015;6:15-32. doi: 10.2147/phmt. s51869 3. mazumder s, taneja s, dube b, bhatia k, ghosh r, shekhar m, et al. effect of communityinitiated kangaroo mother care on survival of infants with low birthweight: a randomised controlled trial. lancet. 2019; 394(10210):1724-1736. doi: 10.1016/s01406736(19)32223-8 4. manazir ali s, sharma j, sharma r, alam s. kangaroo mother care as compared to conventional care for low birth weight babies. dicle medical journal/dicle tip dergisi. 2009; 36(3):155-160. 5. conde-agudelo, a., j.m. belizán, and j. diaz-rossello, cochrane review: kangaroo mother care to reduce morbidity and mortality in low birthweight infants. evidence-based child health: a cochrane review journal, 2012. 7(2): p. 760-876. https://doi.org/10.1002/ebch.1837 6. faqs: management of infants born to mothers with suspected or confirmed covid-19 [internet]. services.aap.org. 2020 [cited 15 july 2020]. available from: https://services.aap. org/en/pages/2019-novel-coronavirus-covid-19-infections/clinicalguidance/faqs-management-ofinfants-born-to-covid-19-mothers 7. q&a: breastfeeding and covid-19 [internet]. who.int. 2020 [cited 15 july 2020]. available from: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/question-and answers-hub/q-a-detail/q-a-on-covid-19-and-breastfeeding 8. cooper, l., et al., close to me: enhancing kangaroo care practice for nicu staff and parents. advances in neonatal care. 2014. 14(6): p. 410-423. doi: 10.1097/ anc.0000000000000144 newborn individualized developmental care and assessment program (nidcap) the newborn individualized developmental care and assessment program (nidcap), originated in 1984 by heidelise als, phd, is the only comprehensive, family centered, evidence-based approach to newborn developmental care. nidcap focuses on adapting the newborn intensive care nursery to the unique neurodevelopmental strengths and goals of each newborn cared for in this medical setting. these adaptations encompass the physical environment and its components, as well as, the care and treatment provided for the infant and his or her family, their life-long nurturers and supporters. assessment of preterm infants’ behavior (apib) the assessment of preterm infants’ behavior (apib) (als et al., 1982) is a comprehensive and systematic research based neurobehavioral approach for the assessment of preterm and fullterm newborns. the apib provides an invaluable diagnostic resource for the advanced level clinician in support of developmental care provision in a nursery. nidcap nursery program the nidcap nursery program provides a comprehensive resource for the selfevaluation by a nursery system of its strengths and goals for integration of nidcap principles into all aspects of their functioning. highly attuned implementation of nidcap care for infants and their families, as well as for the staff, in a developmentally supportive environment is a goal as well as a process. external review and validation by the nfi may be sought when a nursery feels it has achieved this distinction. nurseries that have achieved nidcap nursery certification serve as a model and an inspiration to others. for information on the nursery self-assessment resources as well as the certification process and its eligibility requirements, please see: www.nidcap.org; and/or contact rodd e. hedlund, med, nidcap nursery program director at: nidcapnurserydirector@nidcap.org or 785-841-5440. the gold standard for excellence in newborn individualized developmental care what all newborn infants and their families deserve www.nidcap.org nidcapnurserydirector@nidcap.org developmental observer 20 24 | v o l 1 7 | n o . 1 the official publication of the nidcap® federation international resilience is not an innate capacity. rather it is a dynamic process that requires support and nurturance. —deborah buehler 10.14434/do.v17i1.37084 inside the inaugural heidelise als ............. 1 lecture editorial .............................................................. 2 moment by moment ............................ 6 abstracts from the 2023 .................. 7 nidcap trainers meeting 34th annual nidcap trainers ....... 19 meeting summary and reflection behind the scenes ............................... 22 family voices ........................................... 23 global perspective: china ........... 26 nidcap on the web ............................ 28 nidcap training centers ............... 30 h eidelise als, phd asked can we integrate technological advance into our affective launched-ness as humans.1 this idea of our humanness, our affective launch, and nidcap’s opportunities to support healthy progressions is a critical one. and further, these developments seem interrelated to the notion of resilience. what is resilience? the merriam webster dictionary definition reads: re· sil· ien· cy; an ability to recover from or adjust easily to adversity or change.2 resilience is considered a brain capacity. neuropsychologist david eagleman wrote: the human brain is a dynamic, information-seeking system… it alters its own circuitry to match the demands of the environment and the capabilities of the body.3 what are these environmental demands and body capabilities? within our work, our nidcap framework recognizes the mismatch between the displaced fetus and young infant and their hospital environment. as heidelise often said, we are never not in an environment. she described human infants as having been promised three environments: (1) the mother’s womb; (2) the mother’s breast and body; and (3) the species social group. since the intensive care environment is not one of these evolutionarily promised environments, what are the implications for development and unfolding relationships, for well-being, and, interrelatedly, resilience by being in this environment at such a time in their growth? resilience is the capacity to withstand difficulties. to say that intensive care settings present “difficulties” is a tremendous understatement. difficulties may be experienced as stress. stress may result from novel, unexpected, unprepared, or untoward experiences. for newborns and young the inaugural heidelise als lecture the synactive theory, nidcap, and resilience doi: 10.14434/do.v17i1.37039 (continued on p.2) deborah buehler, phd https://www.merriam-webster.com/dictionary/resiliency?pronunciation&lang=en_us&dir=r&file=resili02%22ri-%cb%88zil-y%c9%99n(t)-s%c4%93 https://www.merriam-webster.com/dictionary/adversity 2 • 2024 • developmental observer the echoes of the 34th annual nidcap trainers meeting are still resonating, marking yet another milestone in our shared journey of promoting developmental care for hospitalized newborns. in this issue of the developmental observer, we are thrilled to bring you the essence of the meeting, capturing the energy and insights that unfolded during this significant event. one of the highlights was deborah buehler's inaugural heidelise als lecture, a powerful discourse on resilience that injects fresh inspiration into our nidcap endeavors. the echoes of her words continue to reverberate, reminding us of the profound impact our collective efforts can have on the lives of the infants we care for. our global community shone brightly as we heard about the groundbreaking work happening across continents. abstract presentations from australia, belgium, canada, colombia, france, germany, iran, israel, qatar, and spain showcased the diversity and richness of our shared commitment. we are confident that the innovative approaches highlighted in these presentations will serve as motivation for your work. gretchen lawhon, in her insightful summary of the meeting, emphasizes the paramount importance of family in our mission. she articulates how the family unit plays a pivotal role in the nidcap journey, underlining the interconnectedness of our work with the broader fabric of familial bonds. through the lens of family voices, katie reginato cascamo shares a deeply personal account of her nidcap experience, demonstrating the transformative power of listening and the profound impact it had on her premature son. her narrative exemplifies the human dimension of our work and reinforces the enduring value of empathy in healthcare. venturing into the international landscape, we explore developmental care in china and xiaojing hu's dedicated efforts to integrate nidcap principles. the global imprint of nidcap is evident, resonating with our shared commitment to realizing the goals set by the nfi for nidcap care worldwide. as the developmental observer embarks on its 17th volume, we are committed to bringing you innovative stories that captivate and inform. in our new "behind the scenes" feature, we introduce rob catalano, a hidden force behind the scenes since the inception of our publication. his story illuminates the collaborative efforts of the many committed individuals who contribute to each issue. your feedback is the lifeblood of our publication, and we eagerly anticipate hearing from you. let us know which features resonate with you and share your ideas for new content. thank you for your unwavering commitment to the nidcap mission. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia erratum. image on page 10 of vol 16, issue 3 should read – ‘joana’ editorial infants, this may be a mismatch between capabilities and capacities and their environments. the center on the developing child at harvard university describes stress as positive, tolerable, or toxic. they write that stress can have a cumulative toll on an individual’s physical and mental health—for a lifetime. the more adverse experiences in childhood, the greater the likelihood of developmental delays and later health problems.4 we know what this looks like from our observational nidcap training. we observe autonomic, motoric, state, attentional, and regulatory stabilities, stresses, and strivings. heidelise frequently quoted winnicott’s writing: babies are liable to the most severe anxieties… if left for too long (hours or minutes) without familiar and human contact; they have experiences which can only be decribed as: going to pieces; falling forever; dying, dying, dying; and losing all vestige of hope for the renewal of contact.5 resilience is not an innate quality. from the womb, fetuses are developing all sorts of competencies. when newborns are born prematurely, they may be described as “fighters” with strong drives to steady, survive and thrive. yet, after attempts to steady and to thrive, they may have experiences of repeated overwhelming instability and they may give up. this is what is referred to in psychology as learned helplessness. if this situation persists it may result in failure to thrive outcomes. reilience develops and is affected by experience. the model of stress apples to individuals of all ages, including parents of infants in intensive care. illness, sleep deprivation, anxiety, fears, struggles, all strain experiences of resilience and well-being and unfolding parenting confidence and competence. professor kristen lee costa wrote: sometimes we just don’t have the skills we need for emotional regulation or stress tolerance. in general, our threshold for coping can vary a lot, cover image by karen anderson doi 10.14434/do.v17i1.37037 a milestone in a shared journey (continued on p.3) 2024 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board according to a lot of variables. even missing a night’s sleep, or not being nourished, or cranking at work with a lot on your plate can press upon us and affect our resilience at a point in time.6 for healthcare professionals, those variables may include staffing shortages, experiences of burn-out, a pandemic and caring for vulnerable and ill infants and their families, including the demandingness of twelve-hour shifts. one can easily see how stressors compound, leading to exhaustion, anxiety and frustration which further lead to lessened feelings of effectiveness, well-being, and resilience. one of the central tenets from our nidcap model is that when stresses are too great for an individual, support from the social environment may have steadying, balancing influences – at all ages. the same council from the center on the developing child at harvard university wrote: the single most common finding is that children who end up doing well have had at least one stable and committed relationship with a supportive parent, caregiver, or other adult.7 stable, committed, supportive, nurturing relationships are at the core of nidcap philosophies and practices. this is the affective bond that heidelise described. to understand the nurturing influence of nidcap on functioning, we can look to the writings and research of our very own nfi scientists: the field of neuroscience provides overwhelming evidence that the brain organizes itself based on its early experiences. heidelise, frank duffy, md, and gloria mcanulty, phd wrote: nidcap significantly improved neurodevelopment in terms of behavior, functional brain connectivity and brain structure and health.8 the study of epigenetics provides mounting evidence that infant environments can change the chemistry of their genes—both negatively and positively. heidelise wrote: nidcap may work at the level of preventing such untoward epigenetic effects by supporting the infant’s optimal genomic rather than distorted epigenomic blueprints.9 from the field of microbiology, jeffrey alberts, phd introduced the idea of a shared mother-offspring microbiome (or mom) with extensive involvement of autonomic, motor, state, attention, and self-regulation functions. alberts was struck by the compatibility of gut-brain ideas with the distinctly integrative and bi-directional qualities of nidcap perspectives.10 (continued on p.4) 4 • 2024 • developmental observer within neurophysiology, oxytocin has been shown to play a role in human behaviors and social interactions. dorothy vittner wrote: oxytocin may serve as a potential moderator for improving responsiveness and synchrony in parent-infant interactions.11 the field of functional medicine studies the influences and interactions of nutrition, molecular biology, and epigenetics on health and disease with individualized approaches to promote well-being. nidcap trainer, deana demare hally describes functional medicine as the focus of the epigenetic interplay between environmental influences and one’s biological systems; which of course very much aligns with synactive theory.12 brain, genes, gut, hormones, and their interactions the evidence is mounting to support the necessity of caring for young infants in environments that closely align with their expectations and capabilities. when nidcap is studied, it is done so as a whole caregiving approach rather than as ingredients to care. this is because the nidcap approach supports dynamic, evolving developmental progressions, relationships, interactions, and systems. the synactive model of development and interrelatedly the synactive model of developmental care have been conceptualized as graphics. to appreciate the complexity of this care, you can overlay these two models on one another for considerations of individuals in the context of the intensive care setting.13 we know from the synactive model of development (figure 1) that individual/environment interactions are continuously occurring with active developmental strivings and that infants are integrally part of their social systems. we also know that development never stops, for any of us. everyone is on their own developmental trajectory and is developing all the time. in our nidcap lectures, we make analogies about how our subsystems are taxed by learning new skills, such as driving a manual car or learning to downhill ski. in intensive care settings, families and healthcare professionals alike are experiencing new and perhaps difficult moments and situations. for the infants, their parents are their primary nurturers and advocates. parents are learning and responding to their own experiences, which include parenting their infant in a hospital setting and all that that means. parents are part of family systems, who are also made up of individuals on their own trajectories. parents, and their family systems, are all in turn cared for by the infant intensive care healthcare professionals and staff. these hospital team members are also interacting with their physical and social environments and developing themselves. healthcare professionals and staff care for infants and families are part of hospital, healthcare systems – which are all made up of individuals. all these individuals and their systems are all part of larger local and global communities. figure 2 is a purposefully dizzying graphic to show that stresses are being experienced at all levels by all individuals… positive, growth-promoting ones, and negative, damaging ones, as well as ones in between. it may be daunting to imagine how to support optimal experiences and outcomes for infants, parents, families, healthcare professionals, and hospital systems, figure 1 2024 • developmental observer • 5 so we look to our nidcap framework to guide us under these circumstances. the key to resilience and well-being in infants, families, healthcare professionals, and even whole systems is through embedding understandings and support for all those individuals with consistently well-integrated, infant-family-staff mutually regulating nidcap care. supported, resilient professionals will support and guide families and parents who in turn will nurture their infant’s emerging next steps and their own resiliencies. this is also multidirectional – balance and strength in an individual (infants through adults) support the balance and strength of others. inspirations from the field of infant mental health support our nidcap care translations to create optimal healthcare environments. joy browne, phd has written extensively and is an important resource on this topic. she wrote: there is no more important place to establish a solid foundation for a baby’s emerging infant mental health than in intensive care.14 she also described the importance of creating a solid foundation for parents and their roles as the parents of their vulnerable young infants. reflection and supportive relationships, integral components of infant mental health approaches, have long been valued and well-integrated into our nidcap approach. linda gilkerson and heidelise wrote: relationships are central to the goals and the implementation of developmentally supportive care. and they quoted shanok to say (t)he inclusion of reflective process as a component of developmentally supportive care helps the nursery become a place where strengths are emphasized while vulnerabilities are partnered.15,16 dr. amit sood stated resilience is the core strength you use to lift the load of life.17 one of the most poignant examples of this message can be found in the story that heidelise used to share in her introductory nidcap lectures about a young infant named ronnie. ronnie was a child who had chronic lung disease. his hospital stay lasted months and months. the triage room in the back of the nicu was converted into his private room with his family. heidelise worked very closely with them. she maintained contact with ronnie through at least 20 years of age. ronnie’s early childhood experience in the hospital, included receiving a tracheotomy and lung disease, yet none of these challenges diminished his delight and joy in his world nor his mother’s confidence in his care and in herself as his mother. that is the beauty of resilience and the power of nidcap care. resilience is not an innate capacity. rather it is a dynamic process that requires support and nurturance. how do infants develop the tools for resilience? how do they go from “giving up” to the beginning of experiences of competence and stability? the guide for developing resilience comes from turning the lights down low, being tucked into flexion, hand swaddling, and holding, it comes from nurturance. the infant’s parents are what is needed for these ongoing opportunities for the infant to experience relaxation and success. and parents need support and nurturance from the healthcare professional team, figure 2 6 • 2024 • developmental observer who in turn, need to be nurtured themselves. nidcap care provides critical scaffolding for the development of resilience. heidelise’s charge to all of us… was can we integrate that technological advance into our affective launch as humans? this is an extraordinarily important challenge to strive to do. because having greater resilience and well-being at all ages helps to navigate difficult challenges of life which in turn may lead to their mastery and ever-joyful lives. references 1. als h. the family in synactive perspective: evolution, biology and psychology. nidcap trainers meeting, october 19, 2015. phoenix arizona usa. 2. merriam-webster dictionary https://www.merriam-webster.com/dictionary/resiliency# 3. eagleman d. (2020). livewired – the inside story of the ever-changing brain. vintage books, new york. p. 7. https://eagleman.com/books/livewired/ 4. center on the developing child harvard university https://developingchild.harvard.edu/ science/key-concepts/toxic-stress 5. winnicott donald w., 'dependence in child care', in lesley caldwell, and helen taylor robinson (eds), the collected works of d. w. winnicott: volume 9, 1969 1971 (new york, 2016; online edn, oxford academic, 1 dec. 2016), https://doi.org/10.1093/med:psych/9780190271411.003.0047 6. costa k. http://mentalfloss.com/article/80152/reliance-isn’t-innate-heres-how-we-can cultivate-it 7. supportive relationships and active skill-building strengthen the foundations of resilience (working paper 13) (2015) national scientific council on the developing child, center on the developing child at harvard university. https://developingchild.harvard.edu/ wp-content/uploads/2015/05/the-science-of-resilience.pdf 8. als h, duffy fh, mcanulty g, butler sc, lightbody l, kosta s, weisenfeld ni, robertson r, parad rb, ringer sa, blickman jg, zurakowski d, warfield sk. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. j perinatol. 2012 oct;32(10):797-803. doi: 10.1038/jp.2011.201. epub 2012 feb 2. pmid: 22301525; pmcid: pmc3461405. 9. als h. lamarck, darwin and the science of nidcap: epigenetics in the nicu. developmental observer, 2011, 4(2). 10. alberts j. (personal communication) – october 13, 2023 11. vittner d, mcgrath j, robinson j, lawhon g, cusson r, eisenfeld l, walsh s, young e, cong x. increase in oxytocin from skin-to-skin contact enhances development of parent-infant relationship. biol res nurs. 2018 jan;20(1):54-62. doi: 10.1177/1099800417735633. epub 2017 oct 11. pmid: 29017336 12. demare hally d. (personal communication) – october 18, 2023 13. als h. (1982). toward a synactive theory of development: promise for the assessment of infant individuality. infant mental health. 3(4), 229-243.; als h (1992). individualized, family-focused developmental care for the very low-birthweight preterm infant in the nicu. advances in applied developmental psychology (vol 6, pp. 341-388). 14. browne j. from infant mental health focus (principle 2) standards in development. the basics of infant and early childhood mental health: a briefing paper | zero to three. 15. gilkerson l, als h. role of reflective process in the implementation of developmentally supportive care in the newborn intensive care nursery. infants and young children; 1995; 7(4): 20-28 16. shanok rs the supervisory relationship: integrator, resource, and guide. in fenichel e, ed. learning through supervision and mentorship: a source book. arlington, va: zero to three; 1992. p40. https://www.amazon.com/learning-supervision-mentorship-development-toddlers/dp/0943657199 17. sood a. stronger: the science and art of stress resilience paperback – december 13, 2018 gauri sood (editor) publisher: global center for resiliency and wellbeing. https://www. amazon.com.au/stronger-science-art-stress-resilience/dp/0999552511 compilation of nidcap in the moment, by deborah buehler 2024 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aims the state subsystem is difficult to understand as a nidcap professional-in-training. nidcap professionals-in-training are expected to reliably recognize the six brazelton states1, and the division of each state into the diffuse (a) or robust (b) subcategory.2,3 the aa state is a unique feature of nidcap naturalistic observation, recognized as a respiratory pause greater than eight seconds and defined in the nidcap training manual as ‘removal from the state continuum’.3 this definition seems to contradict prechtl’s definition of the state as a “discrete mode of neurological activity, during which a group of physiologic and behavioural characteristics that regularly recur together”.4 this implies that the six states are discrete; whereas the aa state definition postulates a state continuum. the complexity of states increases when referring to the apib manual, where states 1aa and 2aa are mentioned as “states in which severe diffuseness is embedded”.5 the confusion about states, particularly the aa state, is a frequent topic of uncertainty at nidcap training days at our nidcap training centre. a lively discussion usually follows but without a conclusion. to gain a deeper understanding of, and to clarify uncertainties about infant state, a survey was sent to nidcap trainers. trainers were asked for their interpretation of the states seen on a short video, and for their understanding of states 1aa and 2aa. methods a six-minute video from a training observation was sent to nidcap trainers, with a google distribution listserv survey. trainers were asked to view the video, and then answer questions about states and transitions, and whether the two-minute intervals used in a nidcap observation accurately captured details of the infant’s state profile. trainers were also asked if the infant moved into state 2aa, and how they explained states 1aa and 2aa to nidcap professionals-in-training. results/findings three responses have been received to date. a) the number of state transitions identified during the video was either 7 or 15 (one respondent did not reply). b) transitions between states: the number of respondents who identified any state(s) during each two-minute time interval is shown below. multiple states could be chosen for each interval: c) all respondents felt that details of the state profile were not captured by simple recording in the table above. d) in response to “when baby stops breathing and becomes flaccid, is he moving into state aa or 2a?’, two replied ‘aa; one did not commit. e) in response to “how do you explain the states 1aa and 2aa to your trainees,” the trainers were not sure; “very good question, not sure myself!”. limitations only three responses have been received to date. the link to the survey and video will remain live at https://forms.gle/ fnnmemstpy258jev5. responses received between the submission of this abstract (30 june) and 31 august 2023 are presented. the quality of the video (e.g. movement artifact) was challenging for some respondents. relevance to nidcap understanding states is critical for reliability as a nidcap professional. caregivers also ideally synchronise interactions to infants’ states and need some appreciation of this concept. our questions and the input from trainers highlight the complexity of ‘state’. we hope to begin a dialogue with the nidcap community toward enhanced understanding of states, that will lead to improved care and outcomes for newborns in hospitals. conclusion states and state transitions are complex and confusing to states and state transitions – dilemmas for dialogue doi 10.14434/do.v17i1.37040 burhani ha1,2,3, el-tawil a1,3, tyebkhan jm1,2,3 1department of pediatrics, university of alberta; 2division of neonatology, stollery children’s hospital; 3edmonton nidcap training centre canada, edmonton, ab, canada table 1 state/ time interval 0 to 2 minutes 2 to 4 minutes 4 to 6 minutes 1a 2a 1 2 2 3a 2 2 2 4a 5a 1 2 6a aa 1 2 https://forms.gle/fnnmemstpy258jev5 https://forms.gle/fnnmemstpy258jev5 8 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aims maintaining a sensory environment appropriate for prematurely born infants is essential to nidcap practice. reflecting such priorities, the american academy of pediatrics recommends baseline noise levels in a nicu at <45 decibels (db) with allowable transient events <65 db. we assessed levels of acoustic noise within the incubators of an open-bay, level 4 nicu resulting from identified sources of equipment and procedures. in parallel to these measures, we sought via a survey of nicu staff, to measure their understanding of the nicu acoustic emissions. methods we assembled a sensory group consisting of 15 nurses from both the day and night shifts, who were trained to use the niosh sound level meter application (app) for ios devices, which is free from the national institute for occupational safety and health. we then enrolled a diverse group of preterm babies (24 – 36 weeks ga) as hush subjects. the hush cohort was updated every week to record their status and screen for any changes in patient condition and hemodynamical instability. sensory group members recorded the acoustic measurements with the niosh app during times designated for protected sleep or “quiet time”. recordings were made for one hour each time. the monitoring device was placed in the incubator, approximately 25-30 cm from its ears as a means of characterizing the acoustic environment experienced by the baby that is transduced into the incubator. a survey was circulated among the nicu staff, mostly nurses, and 87 (> 73% of those invited to participate) completed the multiple-choice survey. they estimated noise levels associated with a variety of nicu events and procedures. their responses were compared to the measured values collected by the sensory group. results the average noise level within the incubators exceeded the recommended baseline maximum of 45 db. of the various sources of nicu noise exceeding recommended levels, alarms from the cardiac monitors were the loudest. in addition, common procedural events such as closing a port hole door produced transient sounds in excess of 100 db, also exceeding recommendations. many respondents (one-third or more) to the survey correctly estimated several sound levels in decibel units. when the estimates made by the respondents deviated from the actual values, they often underestimated the noise levels experienced by the babies. yet, only about 21% of the 87 respondents had an accurate idea of the acceptable maximum decibel level for nicu noise (40-45 db). the respondents offered a variety of appropriate suggestions for limiting nicu noise. relevance to nidcap our findings identify sources of acoustic noise in an open bay nicu that regularly penetrate incubators and expose infants to db levels deemed excessive by current medical standards and which are typically identified as reducible through nidcap practice. conclusions there are numerous identifiable sources of baseline, ambient noise in the nicu, and several sources of transient sounds that vastly exceed acceptable levels. many of these sounds can be reduced or eliminated by resetting equipment and making minor adjustments to procedures. only a minority of nicu nurses in our sample were aware of the quantitative threshold of acceptable nicu noise, but they can be readily equipped to measure and understand it. the results of this preliminary study help clarify staff awareness of noise levels and sensitize us to other non-acoustic factors that affect babies. these exercises demonstrate the importance of research for improving practice. help us support healing (hush): a preliminary assessment of staff’s estimates of acoustic noise in their level 4 nicu doi 10.14434/do.v17i1.37041dela cruz a, cauan r sidra medicine and research center, doha, qatar understand. the subtle features of states 2aa and 1aa may need to be clarified for nidcap trainers. references: 1. brazelton tb and cramer (1990) states of consciousness. pages 63-68 in the earliest relationship, da capo press. https://doi.org/10.4324/9780429481512 2. als h. (2006) manual for the naturalistic observation of newborn behavior. newborn individualized developmental care assessment program (nidcap). nidcap federation international, 2015. https://nidcap.org/wp-content/ uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behaviornewdesign-feb15.pdf 3. als h (1999) reading the premature infant. in: goldson e, editor. developmental interventions in the neonatal intensive care nursery. new york: oxford university press; p. 18-85. 4. prechtl hfr (1974) the behavioural states of the newborn infant. brain res 76:185 doi: 10.1016/0006-8993(74)90454-5 5. als h, lester bm, tronick ez, brazelton tb. (1982) manual for the assessment of preterm infant's behavior (apib). in theory in research in behavioral pediatrics, fitzgerald h, lester b and yogman m (eds). vol 1, new york: plenum press. pages 65-132. https://nidcap.org/wp-content/uploads/2014/12/apib-manual-withhaedits-1feb2011-currently-used.pdf https://doi.org/10.4324/9780429481512 https://nidcap.org/wp-content/uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behavior-newdesign-feb15.pdf https://nidcap.org/wp-content/uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behavior-newdesign-feb15.pdf https://nidcap.org/wp-content/uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behavior-newdesign-feb15.pdf doi: 10.1016/0006-8993(74)90454-5 https://nidcap.org/wp-content/uploads/2014/12/apib-manual-with-haedits-1feb2011-currently-used.pdf https://nidcap.org/wp-content/uploads/2014/12/apib-manual-with-haedits-1feb2011-currently-used.pdf 2024 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aim to evaluate the immediate physiological and behavioural responses of infants during routine nurse-delivered caregiving in the surgical neonatal intensive care unit (nicu) methods a prospective observational study was conducted in a surgical nicu. paired physiological and behavioural data were collected to evaluate surgical infant responses during routine nurse-delivered caregiving (diaper change). continuous heart rate (hr) data were reviewed to explore variation in the mean hr pre-, during-, and post-nurse-delivered caregiving. physiological stress was defined by the study team as a change in the hr of 10bpm or more.1 videos of infant caregiving were captured by a web camera. dedicated software combined audio-visual and physiological data. two nidcap certified professionals independently scored the video recordings, using a study-specific behavioural observation tool consisting of 43 items: 6 measure infant state; 19 measure stress responses; 7 measure self-regulation; 11 measure caregiver-support. videos comprised three epochs: epoch one and epoch three preand post-caregiving of 10 minutes each; epoch two nurse-delivered caregiving of variable timing. a tick was recorded when a behaviour, state or support was observed, and item scores were summed. inter-rater reliability was calculated using the intraclass correlation coefficient (icc). results forty infants participated in the study, physiological data was analysed for 40 infants and behavioural data was scored for a sub-group of 10 infants. the sample had a mean gestational age of 36.9 weeks (sd 2.2) and participated in the study at a mean of five (sd 2.9) days postoperative. twenty-two infants (55%) had gastrointestinal (git), ten (25%) cardiac, and eight (20%) respiratory/oesophageal surgery. physiological results a total of 74,880 data points were reviewed. all groups showed significant changes in heart rate (hr) between pre-caregiving and during caregiving; mean change (bpm) of 15.4 (sd 13.3) in git, 6.3 (sd 4.0) in cardiac, and 16.1 (sd 9.2) in respiratory/ oesophageal groups. effects of caregiving were seen beyond the caregiving period across all groups with hrs not returning to the pre-caregiving baseline within 10 minutes of caregiving completion. behavioural results four-hundred and thirteen minutes of video data were analysed; epoch one 106 minutes, epoch two – 207 minutes, epoch three – 100 minutes. the icc’s were good to excellent across all components of the behavioural assessment tool (table 1). the most frequently observed states, stress, and self-regulation behaviours during caregiving for the sub-groups are behavioural and physiological responses of infants post-surgery during nurse-delivered caregiving griffiths, n 1,2, laing, s1, spence, k1,3, foureur, m4, popat, h1,5, james-nunez, k1, sinclair, l2 1 grace centre for newborn intensive care, the sydney children’s hospital network (westmead) nsw, australia, 2 university of technology sydney, nsw, australia, 3 western sydney university, nsw, australia, 4 university of newcastle, nsw, australia, 5 university of sydney nsw, australia table 1: intra-class correlations for scale components of the observational tool, by epoch scale component epoch 1 pre-caregiving epoch 2 caregiving epoch 3 post-caregiving infant state 0.72 0.71 0.53 stress responses 0.91 0.84 0.78 self-regulation behaviours 0.90 0.90 0.74 icc agreement grading: poor <.40, good to moderate .41 to 0.75, excellent >.762 doi 10.14434/do.v17i1.37079 10 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 reported as median scores. for infant states: git infants drowsy/alert/crying (4.2); cardiac infants drowsy (5.5). stress responses: git infants extend legs (8), splay fingers/toes (6), squirm (6); cardiac infants splay fingers/toes (8) and squirm (7.5). self-regulation behaviours were similar for both groups; git infants hand to face (5), suck/foot clasp/leg brace (3); cardiac infants hand to face (4), suck/hold on/leg brace (3.5). the most offered support during caregiving was, in descending order supportive holding, voice, patting/stroking. relevance to nidcap this research provides nidcap trainers, nidcap-certified professionals, bedside clinicians, and families with information to support infants requiring surgery in the neonatal period and specifically the application of developmentally responsive caregiving. conclusion to our knowledge, there is no published research on surgical infants’ physiological and behavioural responses during nurse caregiving. we found that infants post-surgery demonstrate physiological stress during nurse-delivered caregiving. differences were observed between groups and may represent the differing physiological effects of congenital anomalies. it appears that infants post-surgery express similar repertoires of behavioural stress cues and self-regulation behaviours. ongoing analysis of the study sample will add to these preliminary results and the findings may assist bedside clinicians. references 1. allinson lg, denehy l, doyle lw, eeles al, dawson ja, lee kj, spittle aj. physiological stress responses in infants at 29-32 weeks' postmenstrual age during clustered nursing cares and standardised neurobehavioural assessments. bmj paediatr open. 2017;1(1):e000025. doi: 10.1136/bmjpo-2017-000025. https://doi.org/10.1136/ bmjpo-2017-000025. 2. fleiss jl. (1971). measuring nominal scale agreement among many raters. psychological bulletin, 76, 378-382. nidcap federation international board of directors and staff 2024 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 https://doi.org/10.1136/bmjpo-2017-000025 https://doi.org/10.1136/bmjpo-2017-000025 2024 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 hasanpour m1, zarezadeh m2, rahimi s3, kazemnejad a4 1 ph.d. and professor of nursing, nidcap professional, school of nursing and midwifery, tehran university of medical sciences, tehran, iran, 2 msc of nicn, school of nursing and midwifery, tehran university of medical sciences, tehran, iran, 3 phd of educational psychology, department of psychiatric nursing school of nursing and midwifery, tehran university of medical sciences, tehran, iran, 4 professor of biostatistics, school of medical sciences, tarbiat modares university, tehran, iran. aims a preterm infant's birth and admission to the newborn intensive care unit (nicu) cause parents to experience the loss of their 'ideal' child and reactions of grief, which are known as disenfranchised grief. the incidence of grief reactions in parents makes them susceptible to mental disorders. this reaction to grief and loss is considered an emotional crisis and can persist even after discharge from nicu to home. the purpose of this study was to investigate the effect of a peer support program on the disenfranchised grief severity of mothers with preterm infants. methods this study was a quasi-experimental quantitative study, which was conducted by convenient sampling on 108 (45 control and 45 intervention) iranian mothers with preterm infants admitted to the nicu. sampling was done first in the control group and then in the intervention group sequentially. the control group did not receive any training. however, the intervention was carried out in the intervention group. the intervention included accompanying and empathizing with mothers with preterm infants and supporting them in accepting the conditions by peer-supportive parents in a period of two weeks. peer-supportive parents were selected from experienced volunteer mothers with preterm babies hospitalized in the nicu. the mental health of peer-supportive parents was checked and confirmed using the ghq28 questionnaire, and then they underwent eight hours of training to implement the intervention. study data were collected using a researcher-made, valid, and reliable demographic and grief questionnaire. the participants in both groups completed the pre-test and post-test questionnaires immediately before and after the intervention. data were then analyzed using descriptive and inferential statistics such as paired t-tests, wilcoxon, and mann-whitney tests, using spss software version 16. results the results of the wilcoxon test revealed that in the control group, there was no significant difference in the average scores of grief of mothers of preterm infants before and after the intervention. however, in the intervention group, the paired t-test showed that the difference between the mean scores of grief before and after the intervention was significant (p<0.001). in addition, the results of the mann-whitney test indicated that before the intervention, there was no significant difference in the mean scores of grief between the control and intervention groups. however, after the intervention, the results of the mann-whitney test showed that the difference between the mean scores of grief between the control and intervention groups was significant (p=0.001). relevance to nidcap the newborn individualized develop mental care and assessment program (nidcap) is one of the current priorities of the neonatal health office in the ministry of health in iran and many other countries that emphasize the increasing presence of parents in nicus and support them by staff. infant and family-centered developmental care is one of the core principles of the nidcap model. mothers, as an essential component of the nidcap model, need emotional and empathetic support when they are grieving for their ideal child. conclusion the findings of the current research showed that parent-to-parent peer support intervention was an effective program to decrease grief severity in mothers with preterm infants. therefore, researchers emphasize the importance of receiving support from a parent who shares similar experiences and providing emotional and psychological support by maintaining respect and confidentiality and without prejudice to help mothers with premature babies admitted to the nicu. furthermore, they recommend the implementation of the parent-to-parent peer support program as a part of infant and family-centered developmental care/nidcap care to decrease the preterm infants' mothers disenfranchised grief severity that this may result in increased secure mother-infant attachment. keywords: preterm infant, disenfranchised grief, preterm infant’s mother, prematurity grief, parent-to-parent peer support program, neonatal intensive care unit the impact of the parent-to-parent peer support program on the disenfranchised grief severity of mothers with preterm infants doi 10.14434/do.v17i1.37043 12 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 introduction the protective effects of kangaroo mother care (kc) on the neurodevelopment of preterm infants are well established, but we do not know whether the kc is safe on infants under 28 weeks gestational in the first days of life. aims to describe safety in early kc on preterm infants under 28 postmenstrual weeks. methods this study is part of a primary randomized parallel clinical trial conducted to evaluate the equivalence or non-inferiority of lateral kangaroo care posture versus prone conventional posture. (cangulat study. trial registration at clinicaltrials.gov: nct03990116) rct was conducted at the neonatal intensive care unit (nicu) of the 12 de octubre university hospital (madrid, spain), from may 2019 to november 2021. a total of 105 infants < 28 ga (gestational age) at birth were assessed for eligibility; 35 of them were excluded and 70 were enrolled. during their first five days of life, all kc sessions were monitored. all infants in kc were covered by polyethylene bags to keep humidity and decrease hypothermia risk while keeping maximal skin-to-skin contact. ethics considerations the clinical research ethics committee of the hospital 12 de octubre approved the study (no. ceim 19/206). informed consent was obtained from the parents of all subjects involved in the study. results during the study, 285 sessions of kc were taken throughout the first five days of life. the main results are shown in table 1. of the 285 sessions studied, 78% took place in a single room (sr) and 22% in an open bay room (ob). an umbilical catheter was present in 60% of the sessions (168/285) and peripherally inserted central catheter in 58% (165/285). in 5.6% (16/285) of the sessions, infants were intubated and 94.4% were assisted on duopap/cpap. two of the sessions lasted only 60 minutes due to infant temperatures < 36.5ºc and an accidental extubation occurred. in 80% (228/285) transference was performed by a health professional, and in 20% (57/285) by the parents. ultrasound follow-up detected 8.5% (6/70) of ivh i and 4.3% (3/70) of ivh ii. activity in the room during the kangaroo sessions was measured using the profile of the nursery environment and of care components template score sheet1. when children were in the sr the activity was calmer and quieter (>4-5) than ob (66% vs. 90.3% p< 0.005). as light and noise were softer (6.8 lux vs 3.7 lux p<0.005) and (62 db vs 58 db p<0.005). relevance to nidcap as professionals working in neonatal units, we should have as much knowledge as possible about kc and be able to make parents as autonomous as possible in the kc. conclusion our findings suggest that extremely preterm infants keep normothermia during kangaroo care in their first days of life. is early kangaroo care safe in preterm infants under 28 weeks gestation? lópez maestro m, collados l, jimenez l, serrrano a, melchor p, martinez p 12 de octubre hospital madrid spain doi 10.14434/do.v17i1.37045 table 1 n=70 media ds minmax ga (wk) 26.2 1.2 24-27.8 weigt (g) 859 ± 63 196 510-1460 apgar 5 min < 4 7 (10%) 2.3 2-10 days of admissión 52.17 24 3-141 sex (male) 46 (65,7%) csection 39 (55,7%) 8.2 hours of life of the 1st kc 38.1 8-99 duration of kc sessions (min) 130 56 50 – 365 oxygen saturation 95% 3.4 oxygen supplementation % 25.4 8.5 heart rate 153 12 tª 60 min after beginning kc 36.7 ºc 0.4 infants with apnea during the first kc session, % (n) 30% (21/70) 2024 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 introduction newborns are exposed to many painful procedures in neonatal intensive care units (nicus). neonatal pain has been recognized in the eighties and many scales have been developed to assess and manage pain. despite this, pain management in nicus is often suboptimal and remains challenging. over the last decades, parents have become more and more involved in the care of their babies. aims the primary aim of this study is to compare the edin pain scale assessed by parents with the assessment made by caregivers. this is to determine if parents could be reliable resources to optimize pain management in ill newborns. the secondary aim of the study is to evaluate the swedish alps-neo scale compared to the edin pain scale as a potential and more appropriate tool for assessing stress and pain in newborns. methods a prospective study was conducted in the nicu of saint-pierre university hospital in brussels, belgium. the study compared the edin pain scale assessed by parents to the one assessed by caregivers. from january 1st to may 31st, 2022, informed consent was obtained for fourteen newborns. parents of these newborns who were enrolled in the study were trained (one hour) in assessing the edin scale by an experimented caregiver. both parents and caregivers assessed the edin pain scale. edin scores of parents and caregivers were compared. caregivers also assessed the alps-neo pain scale for each edin score. results the results showed that the edin scores assessed by parents were significantly higher in absolute value compared to the scores assessed by the caregivers. however, there was an agreement between parents and caregivers in identifying positive pain scores (edin≥ 5) in 77.8% of the cases. parental pain assessments were particularly amplified during painful procedures. parent’s pain assessment is more constant during the day while caregivers assess pain mostly during the morning. the alps-neo pain scale was found to be more efficient, precise, and supportive of nonpharmacological pain management compared to the edin scale. a larger study in the unit is currently underway to confirm these findings. relevance to nidcap the study highlights that parents’ assessment of the edin pain scale is as reliable as those of caregivers. furthermore, parents consistently evaluate pain throughout the day, indicating that their involvement can contribute to more optimal pain management. this underscores the importance of a family-centred approach in nicus. conclusion to improve pain management in the nicu, parents should receive training in assessing pain and stress and become active collaborators in the assessment process. alps-neo is suggested as a validated, user-friendly pain scale that could be more suitable for use by parents compared to the edin scale. alpsneo promotes nonpharmacological pain management and may offer a more appropriate tool for parents to assess their newborns’ pain. time for change: let parents assess neonatal pain in the nicu kottos e, druart d, van herreweghe i nicu, saint-pierre university hospital, brussels, belgium doi 10.14434/do.v17i1.37044 and there are no risks concerning devices such as umbilical catheters and endotracheal tubes, ivh is not increased, as all ivh cases were grade 1 or 2. if kc takes place in a single room, a calmer environment and a more appropriate noise and light level surround children. references als h, buehler d, gilkerson l, smith k. profile of the nursery environment and of care components template manual part 1. nidcap training manual. nidcap federation international, 2015. the editorial team of the developmental observer is looking for nfi members who may be interested in becoming a reviewer for the do. if interested please send an email and a copy of your cv to the senior editor at developmentalobserver@nidcap.org 14 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 mazlan m1, qureshi n1, george b2, dela cruz a2, motala r1, tscherning c3 1 allied health, sidra medicine, qatar, 2 neonatology, sidra medicine, qatar, 3 neonatology, oslo university hospital, norway introduction sidra medicine is the only 4 neonatal intensive care unit (nicu) in qatar and was opened in 2018. eastern and western practices of neonatal care converge in this nicu. a multidisciplinary team was formed to identify the challenges of the nicu and address areas where incremental changes would have a significant impact on neurodevelopmental care. aim the aim is to improve and promote awareness and implementation of neurodevelopmental care. methods a plan-do-study-act cycle (pdsa) was used (figure 1) by a core multidisciplinary team known as the managing infant neurodevelopment (mind). an initial survey was carried out in the nicu to get a baseline understanding of the overall knowledge and awareness of neurodevelopmental care. based on the results, the team was divided into subgroups to address the individual issues identified. a key intervention was family and infant neurodevelopmental education (fine 1) training for all nicu staff with a selected team (n=10) to continue on fine 2 training. weekly education sessions on various topics related to neurodevelopmental and family centered care were implemented to the wider multidisciplinary team followed by a follow-up survey aimed at understanding changes in awareness of neurodevelopmental care. results in the initial survey, 89% of staff acknowledged the importance of neurodevelopmental care, but only 4.6% of staff had completed any formal training. all staff were mandated to complete fine 1 training during a four-month period (n= 250). in the follow-up survey, 93% of staff acknowledged the importance of neurodevelopmental care, 64% could identify that the baby was stressed and needed a break and 73% could identify the baby’s strategies to self-regulate. discussion/ relevance to nidcap implementing fine training in the nicu improved the knowledge around developmental care and observation of the newborn. response rates were low in the two surveys [68% response rate (n=179) versus a 30% response rate (n=49)]. it may be reflective of the high turnover encountered as a response to the covid-19 pandemic and subsequent lockdown. during the pandemic, there has also been an influx of quality improvement projects within the nicu. while having the commitment to change is encouraging, it can also be overwhelming and mentally exhausting to continually overcome challenges to facilitate positive change. protecting dedicated time for the core group to be able to educate the wider team was challenging and this was addressed by a proposal from the core group to the leadership team emphasizing the importance of implementing neurodevelopmental care. weekly protected education time was granted and such training for the professional healthcare team and managing resources is also a part of the nidcap philosophy. implementation of the fine program which focuses on an understanding of the interconnection of the autonomic, motor, and state subsystems and reading the subtle cues of the baby’s communication through their behavior and self-regulation creating awareness of the impact of neurodevelopmental care in a level 4 multicultural greenfield nicu: a quality improvement project implementing fine doi 10.14434/do.v17i1.37046 figure 1: pdsa cycle 2024 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 before, during, and after caregiving procedures will enable caregivers to maximize comfort during caregiving, alleviate pain and support infant’s organization, which are components of nidcap’s philosophy for infant care. conclusion this quality improvement project has succeeded in creating awareness of the importance of neurodevelopmental care and its lasting impact, opening the door for targeted education sessions and further bedside learning. each member of the multidisciplinary nicu team has a responsibility to ensure they follow standards of practice and understand its implications. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2024. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer our sponsors dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. sponsor of the nfi and the 34th annual nidcap trainers meeting. dandle•lion medical, the leader in neurodevelopmental care, makes it easy to provide consistent, effective, evidence-based care for hospitalized babies. our patented positioning aids provide a womb-like experience while our education programs meet ongoing clinical needs. becoming part of our dandy pride of lions means providing the best care for your patients, support for your clinicians, and value for your organization. sponsor of the 34th annual nidcap trainers meeting 16 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 morillo a1, izquierdo m1, norato castro p2, agut t1, cervantes r1, riverola de veciana a1 1 hospital sant joan de deu, barcelona, spain, 2universidad nacional de colombia, bogata, columbia aims 1. to describe the growth trajectory of very preterm infants during their hospitalization in the neonatal intensive care unit (nicu), before and after an infrastructure change to family-single rooms (fsr). 2. to describe the differences in the environment, collected through systematic assessments of nidcap observations before and after this change. methods a descriptive and retrospective study was undertaken by reviewing medical records and nidcap environmental profile forms, of newborns admitted to the nicu of the hospital de sant joan de déu in barcelona. two periods were analysed: the first period (p0: january 2019-april 2021) and the second period (p1: may 2021-december 2022). patients in p0 were cared for in the old unit with large rooms of 8-10 cribs and patients in p1 were in the newly built unit with fsr. all admitted preterm ≤ 32 weeks of gestational age in the first 48h of life without congenital malformations or genetic alterations were included. variables included epidemiological [gestational age, sex, small for gestational age (sga)], anthropometric (weight, length, and head circumference at birth/discharge and z-score change in weight from birth to discharge), clinical outcomes (days of admission, ventilation and venous catheter days and incidence of bronchopulmonary dysplasia, retinopathy, and neurological complications). the environmental profile was assessed using the profile of the nursery environment and of care components template scale1. results the number of recruited was 202; 120 in the p0 group and 82 in the p1 group. patients who had nidcap observations were 28 in the p0 group and 21 in the p1 group. regarding the clinical variables, only length of admission, days of oxygen, and mechanical ventilation were statistically different (longer in group 1). growth and other clinical outcomes in very preterm infants before and after nicu single-family room implementation doi 10.14434/do.v17i1.37078 table 1 shows the baseline characteristics of the two populations and the change in weight z-score period 0 (n=120) period 1 (n=82) p ga (weeks) 29.4 ± 2.2 28.6 ± 2.2 0.017 sga 10/120 (8.3%) 19/82 (23.2%) 0.004 crib score 1.8 ± 2.8 2.7 ± 3.2 0.056 birth weight (g) 1300 ± 405 1076 ± 409 <0.0001 zs birth weight 0.38 ± 1.1 -0.27 ± 1.4 <0.0001 differences in weight z score discharge-birth -1.60 ± 0.98 -1.11 ± 1.02 0.001 table 2: the environmental profile, statistically significant differences were found in the variables shown in the table period 0 (n=28) period 1 (n=21) p physical layout 4.29 ± 0.763 4.86 ± 0.359 0.001 density. cradle space 4.32 ± 0.772 4.86 ± 0.359 0.002 design. crib spacing 4.14 ± 1.008 4.86 ± 0.359 0.001 family participt. 4.67 ± 0.620 4.86 ± 0.359 0.189 easy access to professional support services 4.57 ± 0.742 5.00 ± 0.000 0.005 light level 4.00 ± 0.943 4.57 ± 0.507 0.009 sound level 3.82 ± 0.983 4.14 ± 0.573 0.158 activity level 3.39 ± 0.940 4.48 ± 0.512 0.020 specific aids for self-regulation 4.39 ± 1.066 5.00 ± 0.000 0.006 care between two caregivers 6/28 (21%) 4/21 (19%) 0.150 table 2 note: aspects of environment and care are measured on 5-point rating scale. a score of 1 reflects lack of consideration or misunderstanding of developmentally supportive opportunities; a score of 5 reflects a high degree of developmental support and/or sensitivity 2024 • developmental observer • 17 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background skin-to-skin care (ssc) reduces morbidity and mortality in preterm newborns (pn) and is an important part of developmental care. however, extremely preterm infants are generally ineligible for early, prolonged ssc because of the need for increased humidity, and visibility, which is currently available only in incubators. to address these issues and enable continuous ssc in this population we invented the skincubator – a novel, wearable, bottomless incubator (figure 1). the skincubator creates an enclosed environment with all the advantages of a neonatal incubator (humidity, temperature regulation, and good visibility) on the parent's torso. enabling early prolonged ssc for very preterm newborns. aims to evaluate the feasibility, safety, and thermal management of ssc in the skincubator versus traditional ssc. methods a safety trial comparing thermal stability during traditional-ssc (tssc) sessions, and skincubator sessions was conducted. population: step 1: five pn, ga 29-34 weeks from day of life (dol) four with no respiratory support. step 2: five pn, 26-33 weeks from dol 4. step 3: fifteen pn, ga 26-33 weeks from birth or 24-28 from dol 4. temperature stability, humidity levels, and parental feedback were assessed during both types of ssc sessions. results eighteen preterm newborns were enrolled in steps 1-3. in steps 2-3 we compared 35 paired sessions of skincubator and t-scc performed on 12 babies. (one baby– treated in the skincubator in delivery room, was excluded from session analysis because parents did not participate in the study in the nicu). demographics of included pn were (average (range): ga 29 (26-32); weight 1288 gram (660-1590) dol 5.2 (1-11). no safety issues occurred during skincubator care. skincubator humidity was >70%, 95% of the time. parents appreciated the skincubator as safe and comfortable. the average time out the skincubator: a novel device for early prolonged skin-to-skin care for very and extreme preterm neonates nitzan i, bin nun a, hammerman c, kagan t, metrikin-gold a shaare zedek medical center, jerusalem, israel doi 10.14434/do.v17i1.37076 figure 1. a 660-gram preterm baby in the skincubator, in skin-to-skin contact with his father, with 85% environmental humidity. figure 2. the updated model of the skincubator that we are developing following learning and feedback from the parents and staff who participated in the trial. it includes: an opening for parents to see, smell, and talk with the infant; easy access for staff from multiple points; and allows most nursing and clinical procedures while in ssc. it has disposable covering to reduce contamination risk, dedicated anchors for all lines and tubes, and safe anchoring of the baby on the caregiver's chest. after adjusting for confounding variables such as gestational age at birth, being sga, and severity of illness, being born in period 1 remained associated with a lower change in weight z-score from birth to discharge (b-coefficient 0.283 ic 95% 0.318-0.866; p <0.0001) relevance to nidcap moving to single rooms resulted in better environmental profile scores. also, the weight gain of the babies was higher in the new nicu. we hypothesize that this could be because the environment was better than previously, and favored families' privacy. conclusion preterm infants were found to have better growth during admission after the architectural change, despite a higher prevalence of sga infants and a lower gestational age in this period. due to the retrospective design of the study, we cannot rule out that other factors could have influenced our results. references als h, buehler d, gilkerson l, smith k. profile of the nursery environment and of care components template manual part 1. nidcap training manual. nidcap federation international, 2015. figure 1 figure 2 18 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 currently, some kind of developmental care is to be found in most neonatal intensive care units (nicu), and the presence and participation of the parents are considered fundamental by neonatologists worldwide. the history of developmental care has rarely been studied. bibliometrics as a quantitative method is not only useful for research assessment purposes, but also for analyzing the history of science. reference publication year spectroscopy (rpys) was proposed to objectively analyze the roots of a research field.1 rpys has been used for example for neonatal pain.2 aim we investigated the historical origins of developmental care in newborn infants using rpys to reveal the most important publications for the evolution of this research field and to evaluate their relative importance within the field. methods a web of science search query combining infantand intervention-related synonyms was performed on february 2, 2022. the search retrieved 5,633 papers containing 7,248 distinct cited references. rpys analysis was performed on this dataset to identify the most referenced historical publications for developmental care in newborn infants. median deviation analysis identified peak publication years including the most cited historical references. landmark papers were defined as those belonging to the top 10% of the most frequently referenced publications for longer than 20 years. results the rpys peaks showed an early phase (1936-1986), during which infant development was studied and analyzed, leading to a conceptualization of developmental care for newborn infants. the following years (1986-2015) showed an explosion of interest in developmental care, highlighting two main programs: the newborn individualized developmental care and assessment program (nidcap) and the infant health and development program (ihdp) with many publications during those years striving to demonstrate the evidence of their clinical benefits. relevance to nidcap a major turning point was the conceptualization of the synactive theory of development by h. als in 1982. nidcap (and the ihdp) provided the basis of the broad concept of infant and family-centered developmental care, implemented at various levels in most nicus since the turn of the century. conclusion developmental care has become increasingly important through the implementation of two programs: nidcap and ihdp. published 2024, acta paediatricia https.//doi.org/10.1111/apa.16996 references 1. marx w, bornmann l, barth a, leydesdorff l (2014). detecting the historical roots of research fields by reference publication year spectroscopy (rpys). j assoc inf sci technol 65(4):751-764. doi:10.1002/asi.23089 2. anand kjs, roué jm, rovnaghi cr, marx w, bornmann l (2020). historical roots of pain management in infants: a bibliometric analysis using reference publication year spectroscopy. paediatr neonatal pain 2(2): 22-32. doi: 10.1002/pne2.12035. historical roots of developmental care in newborn infants: a bibliometric analysis using reference publication year spectroscopy smith m1, marx w2, anand ks3, haunschild r2, sizun j4, roué jm1 1 university hospital, brest, france, 2 max planck institute for solid state research, stuttgart, germany, 3 department of pediatrics, stanford university school of medicine, usa, 4 university hospital, toulouse, france doi 10.14434/do.v17i1.37077 of the axillary temperature target (36.5º 37.5º) was 7.4±13.5 and 19.7±27.8 min during skincubator and t-ssc respectively (p=0.002). initial temperature drop during skincubator care was smaller than in t-ssc (0.2º±0.1 vs 0.5º±0.3 p<0.001 n=35). six babies had picc lines or umbilical venous catheters, and one received phototherapy during skincubator care. no line dislodgment occurred. no baby had moderate hypothermia during skincubator care. five babies experienced moderate hypothermia of 35.5-35.9 during 6 t-ssc sessions. relevance to nidcap the skincubator may promote early ssc for very and extreme preterm newborns, aligning with the principles of nidcap by providing individualized, developmentally supportive care in the nicu. conclusions the skincubator can effectively create a humidified and warm environment on the human body for pn. the skincubator seems to be safe and may be superior to t-ssc in maintaining pn temperature, this may be clinically significant for extreme pn. further research is needed to validate these promising results and assess the long-term benefits of the skincubator in improving outcomes for premature neonates. 2024 • developmental observer • 19 good afternoon, our nidcap work is all about seeing the lived experience of others, specifically the infant within the context of their family. as a nidcap professional, i have both the privilege and the responsibility to function as the voice of the individual infant and to facilitate others to understand their vulnerability, strength, and effort to navigate this strange new world outside of their mother’s womb. it is through nurturing relationships that we strive to support each infant, family, healthcare professional, and one another within the global community of the nidcap federation. for 34 years we have taken the time and energy to rededicate ourselves to this mission of improving the future for all infants in hospitals and their families with individualized, developmental, family centered research-based nidcap care. families are essential for the infant’s wellbeing. this is true from a biological perspective, through the family’s experience and in an effort to change our systems to provide a most supportive context to support families nurturing their infants. rarely an infant does not have an identified family. that is true for us as grown-up infants, as adult family members, as professionals who dedicate our careers to supporting infants and families – one infant at a time, one family at a time, one hospital at a time across the globe. families are complicated and made up of complex individuals. therefore, being a member of a family as well as supporting one another through our growing relationships is far more easily said than accomplished. many of you are aware of my somewhat unique family experience. my chosen family consists of myself and my husband of 47 years, in a multi-generational home with our son, his wife and their three amazing children. we honor the boundaries of our various relationship roles as parent, child and grandparent. we support one another through strong and close relationships nurturing one another through meals and childcare with mutual collaboration as we celebrate milestones of both young and old. then there is my experience of my family of origin – being one of thirteen adult children navigating our lives as individuals and family members beyond those of our deceased mother and father. we honor our parents’ wishes and dreams by sharing an amazing lake property and coming together for a full week every summer— and just as we the nidcap family are finding our way beyond our deceased fearless courageous leader heidelise als, we are struggling during the transition – trying to honor and be true to heidi’s mission and vision as our relationships understandably reconfigure. and just to complicate things a bit— both these losses in my family of origin as well as my nidcap family occurred within the context of the global pandemic. 34th annual nidcap trainers meeting summary and reflection gretchen lawhon, phd, rn, faan, master nidcap trainer presented to the delegates on the final day of the meeting doi 10.14434/do.v17i1.37080 gretchen with 11 of her 12 siblings 20 • 2024 • developmental observer nonetheless, here we are for our 34th year of meeting. this is what i think of as the annual reunion of my professional family. we have been trying to reconnect and to nurture ourselves and one another – building and strengthening our relationships – both new and old. we have learned a style of didactic presentations interspersed with small group discussions where we share ideas and experiences in a more personal manner. we are nurtured by our local hosts with food, drink, and social gatherings to further facilitate shared experiences and building relationships. deborah buehler (nfi president) provided the inaugural heidelise als lecture reminding us that the origin of heidi’s work included the concept of integrating the technological advances for our most vulnerable infants with the affective humanness of infants and their neurobiologically expected environments of the womb, parents’ body and family social group. throughout the first day not only did we have the joy of seeing powerpoint introductions of each individual attending in person but also those joining us virtually. for myself, and no doubt many others, this time dedicated to acknowledging each person provides us with feelings of pleasure, pride, and joy. in addition, stina klemming (sweden) and kaye spence (australia) provided us with not only a summary of our work over this past year, but also coordinated and put together an amazing array of every nidcap center’s individual accomplishments in the words, through video, of a representative of each center. for me, this was clear evidence supporting heidi’s statement that deborah mentioned “that we are all connected, we mutually support, teach, learn from, and enrich one another”. this speaks to me of relationships, both familial and professional. the other meaning, i took from our accomplishments was a strong sense that we have come out of the dark tunnel of the pandemic. as an organization, as a professional family – not only have we survived the pandemic, but we are thriving with renewed interest, enthusiasm, and growth of the nidcap federation. of course, with growth, there is some disorganization, sibling rivalry, and necessary, although sometimes painful, reorganization. our membership meeting and small group sessions on nurturing nidcap and the next steps for the nidcap federation provided a safe space for individuals to express some frustrations, sometimes courageous honest, yet difficult feedback which i believe will lead to much more valuable discussion with upcoming creative strategies and increased communication. as all families, we as the nidcap family have some traditions when we come together. we enjoy sessions such as our nidcap nursery small group exercise where we can look at a videotaped infant-caregiver interaction and discuss, evaluate, and assess, bringing our different disciplinary perspectives. another regular session we had was to think about and share various ways our nidcap work is translated to foundational education. we heard from diane ballweg about her experiences in various hospitals in the usa as well as nadine griffiths’ australian experience and graciela basso’s program for neonatologists in south america. woven throughout our three days were quite a variety of abstract presentations, a dozen of them which whet our appetite, generated further discussion and potential collaborations. this reminded me of being a child at the dinner table in my family of origin when it was expected that each of us would talk about our school day. some abstracts were a bit provocative, some quite novel, and overall, both reinforce our nidcap work and suggest further avenues for exploration. on day 2, we were able to get into our small groups to discuss and share moments of joy experienced with infants, their families and healthcare team. this topic had been delayed from in person participants at the 34th nidcap trainers meeting 2024 • developmental observer • 21 last year due to our somber meeting with our first gathering since heidi’s death. it was wonderful to share the moments of joy found within our emotionally exhausting work. on day 3, our nidcap family welcomed friends and guests, both in person and virtually, to join us as we concentrated on the essential importance of families to the wellbeing of the infant. in my work as a clinical nurse scientist, i often share with families that the most influential variable in long term outcome of infants is a nurturing adult infant relationship. with much appreciation jacques sizun (france) provided the tone for the day when he reflected on the legacy of heidelise als reminding us of how brilliant she was and so much ahead of time in her insights. we then had the opportunity to have jeff alberts enlighten us on the science of skin development and research on the development of touch, realizing that the most crucial containing touch has yet to be explored. joy browne (usa) gave us a great deal of information on the importance of sensitive periods in both infants and parents beyond the newborn period through the first months of early development. mandy daly (ireland) was incredibly generous in facilitating our understanding of the lifelong implications of prematurity from the family perspective. the afternoon was such a treat to have the enthusiasm of liz rogers (usa) on creating the culture of care in her setting with numerous wonderful ideas for each of us to take to our clinical homes. kiera sorrells was an inspiration to one and all as she shared her own experience with her premature daughters and how she took that difficult experience and translated it into the creation of an organization to support other parents in the usa. nick conneman (netherlands) shared his vision for achieving developmental care through the nidcap model emphasizing the importance of trust in the process. debra paul (usa) took her difficult situation of becoming a lone nidcap professional in a busy clinical setting and managed to strategize ways to continue to move forward on her own. she inspired me and i much appreciated her practical approach. saadieh masri (lebanon) finished our presentations with a very practical approach to how nidcap crossed frontiers – as she said, walk the talk. so, as we leave the 34th annual nidcap trainers meeting in chicago, what i call our professional family meeting, whether you have attended in person or virtually, for all three days or the open day, let us reflect on each of our own experiences. despite my initial fear and trepidation in returning to this prestigious group, the same feeling i have when heading to my family reunion each summer, i have no regrets. i am so pleased to have met new people, reconnected with friends and colleagues from as long ago as 1980, and gained a much more positive sense of the accomplishments of this organization. i felt much joy in spending time with you all and building relationships. we strive to mentor caregivers and change hospitals and when we do this work as well as possible it may be emotionally exhausting. let us go forth and continue to live the nidcap values of appreciating another’s lived experience and to improving the future for all infants in hospitals and their families with individualized, developmental, family centered research-based nidcap care. through our mutual support of one another, we can navigate our organizational transition successfully and continue to meet our mission. i hope to see each of you next year for our 35th annual nidcap trainers meeting in toulouse, france or what i call my professional family reunion. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 22 • 2024 • developmental observer behind the scenes: rob catalano the developmental observer relies on many individuals for each issue that goes into production. to launch this feature i would like to introduce rob catalano, the graphic designer for the developmental observer. i put some questions to rob to learn more about the man and his experiences as part of our team. kaye spence (ks). can you tell us a little about yourself? rob catalano (rc). i am a graphic designer and i live with my wife and two sons in lexington massachusetts. i graduated many years ago from the university of massachusetts, amherst with a fine arts degree in sculpture and a minor in graphic design. i’ve had some adventurous jobs over the years (building bicycles, lobster fishing…) but it’s been graphic design that has stayed with me, keeping me grounded. in the past, i have worked for newspapers, magazines and design agencies but have been on my own now, for over 25 years. i do a lot of print design work; newsletters, annual reports and branding, mainly working with adobe indesign, photoshop and illustrator. over the past 5 plus years i have been doing more web design. ks. what would you say is most important to you? rc. what’s most important to me is certainly my family and friends. my wife and i will be celebrating our 30th wedding anniversary this coming year, and our two sons are now both in college. all together we have a large extended family and many friends. i’m grateful for the life i have, and the people in it. ks. what do you like most about being a creative designer? rc. i can’t picture my life not doing creative things. being a graphic designer satisfies my need to be creative while also providing a source of income, which is important. as they say “do what you love, love what you do”. what i enjoy most about work is the collaboration with clients; working on an idea or project that they aren’t quite able to express themselves. collaborating with them and bringing it to fruition, together, gives me great satisfaction. it’s also very gratifying seeing your work out there in the world. ks. how did you first become involved with the developmental observer? rc. it was back in the spring of 2007 and nidcap was looking for someone to come up with a new, professional look for their newsletter. i believe sandra kosta had initially reached out to some friends of mine, but they were too busy to take on new work and referred her to me. i had already been doing work for boston children’s and mass general hospitals at the time. i showed her some ideas for a design and we proceeded to lay out vol. 1 no.1. we’ve been working together since! ks. we are now up to volume 17. what do you see as the changes that have occurred over the years? rc. most of the changes i have seen over the years are to nidcap itself, as an organization. when i started work on the newsletter, i think there were 15 training centers in 5 countries. now there are about 30 training centers in 18 countries. nidcap training and practices seem to have grown from a niche approach to becoming much more mainstream, practiced at hospitals worldwide. all this has been reflected in the writing and contents of the newsletter. it all keeps growing. ks. do you have a favorite article/feature in the do? rc. it’s hard not to feel emotional when you read the family voices pieces. they are written by families who have experienced intense, life changing experiences related to childbirth, with some of those experiences having happy endings, and some not. but they all praise the care and guidance they received from their nidcap teams. those testimonials are strong endorsements of the great work being done. ks. how do you see the do advancing in our technological world? rc. i’ve already witnessed the technological progression of much of the work i do. sandra kosta and i used to go on “press runs” to sign off on the two-color printing of the first editions as they came off the printing press, ink still wet. now the newsletter is distributed digitally and accompanies the website and social media pages. also, every article now has a digital object identifier (doi) so it can be easily found on the web. b e h i n d t h e s c e n e s doi: 10.14434/do.v17i1.37083 (continued on p. 25) 2024 • developmental observer • 23 f a m i l y v o i c e s d efining moments can alter our life course in unimaginable ways. that moment came into my life on december 12, 2009, when my son giovanni was born prematurely at 30 weeks and three days gestation, weighing two pounds and eight ounces (1270 grams). little did i know that this experience would lead to a profound transformation, both personally and professionally, and that nidcap trained nurses would become my greatest teachers. before giovanni's birth, my life was consumed by a relentless pursuit of corporate success. i was entangled in the world of corporate insurance, where external values for performance awards overshadowed my well-being. the pressures of meeting unrealistic performance standards set by management eroded my self-esteem, pushing me to internalize the stress. my physical health began to deteriorate, and i became a hollow representation of myself. the word burnout was a word that had yet to exist in my vocabulary in 2009. the world health organization defines burnout as a syndrome arising from chronic workplace stress that remains unmanaged. burnout manifests through three dimensions: 1) feelings of energy depletion or exhaustion, 2) increased mental distance from one's job, encompassing negativism or cynicism towards the job, and 3) reduced professional efficacy.1 burnout transcends a mere reluctance to go to work; it is a persistent state leading to fatigue, disengagement, self-doubt, and a sense of being trapped and defeated. as a small business owner, my financial investment and liabilities, left me feeling trapped without exit. threats by my district manager to “ruin” me led to toxic burnout, an idea that the environment or circumstances contributing to burnout are physically and psychologically harmful or detrimental to one’s human nature. toxic burnout may occur because of a toxic work culture, unrealistic expectations, poor leadership, lack of work-life balance, or other factors that negatively impact a person’s well-being. toxic burnout while pregnant substantially impacted the growth and health of my unborn son. my obstetrician neglected to consider my concerns and downplayed the significance of my personal experiences, particularly regarding the potential adverse outcomes of toxic stress and burnout.2 throughout my seven-month pregnancy, numerous crises hindered any opportunity for excitement or joy associated with the experience. these crises ranged from a flood in our home and a fractured katie reginato cascamo is a champion. a classic overachiever that holds herself to the highest standards. good and noble. right up until it’s not. katie shares her story about not being heard professionally, the frustrations that go along with that, and what ultimately led to stress and trauma during her pregnancy. thanks to compassionate nidcap trained nurses in the nicu following the arrival of her son, katie’s voice was heard and respected. katie learned how to read the voice of her newborn son and how to support him. in her story, katie shares with us how her nicu journey had a transformative impact on her career path and contributed to her taking on a role as a parent leader in the nicu. katie is a shining example of the positive influence of nidcap. from corporate climber to nicu advocate: how nidcap transformed my life as a parent in the nicu katie reginato cascamo column editor: debra paul otr doi: 10.14434/do.v17i1.37082 giovanni and katie in the nicu 24 • 2024 • developmental observer hand to workplace bullying, resulting in a 55% reduction in income and the abrupt end of my career. i faced challenges such as jury duty, h1n1 swine flu, hand reconstructive surgery, and a clinical failure to address early signs of pre-eclampsia. on december 8, 2009, a blizzard blocked the emergency airlift helicopter's attempt to transport my unborn son and me to a regional hospital with a neonatal intensive care unit (nicu). the fear of being stranded triggered a freeze response, causing me to dissociate and complicating my ability to advocate for my health. my proactive decision to purchase airlift insurance months earlier proved lifesaving. i was transferred by ambulance to a fixed-wing plane, over a 5500-foot mountain, and then by ambulance to a regional health system known for its excellent neonatal healthcare. upon arrival, a team of nurses and physicians seamlessly coordinated my care, demonstrating a level of collaboration and skilled expertise that starkly contrasted with my own professional experiences. this pivotal moment not only instilled feelings of trust, but also planted the seed that would go on to shape my future role as a nicu parent leader. i underwent four days of bed rest, hopeful that reducing stress would support the extension of my pregnancy. during this time, we consulted with a neonatologist who detailed the various stages of the neonatal journey at 30 weeks, 32 weeks, and 34 weeks. this meeting proved instrumental in helping me visualize the possibility of an extended stay in the nicu, enhancing my reserves of courage and strength as i prepared for my son’s premature birth. the experience of trauma during pregnancy revolved around the absence of listening. distinguishing between hearing and listening is important. hearing involves the physiological processes of receiving auditory sensations through the ears and transmitting them to the brain. listening is a more psychologically complex activity that involves interpreting and understanding the significance of the auditory information.3 our clinical records document healthcare providers acknowledging the information transmitted in writing. the lack of action following this acknowledgment indicates a failure to truly listen and respond appropriately. my husband john, and my parents, jim and caroline carter supported me as primary caregiver for our 56 days in the nicu. our two months in the nicu led me to appreciate active listening that equipped me with wholehearted healing. our nicu nurses did not just care for giovanni; they became our mentors, guiding us step by step in caring for our fragile infant. our nicu nurses understood the voice of fear that came with this responsibility and provided individualized care that empowered me to overcome my uncertainty and gain the skills needed to care for giovanni independently. as my confidence grew, so did my ability to listen and empathize with others. our nurses listened to my story of professional burnout and toxic culture and helped me navigate my identity crisis that was rooted in my professional endeavors. the practice of listening, modeled after my nidcap trained nurses, became one of my pillars of leadership. our nurses not only taught me how to care for giovanni, but also how to recognize signs of stress in both him and me. i began to understand the value of wholehearted connection and used these skills to calm my son and myself. according to otto scharmer, ph.d., there are four types, or levels, of listening: 1. downloading: listening is limited to reaffirming what we already know, and new information struggles to break through our established understanding. 2. factual listening: we let the data speak to us and pay attention to information that contradicts our existing views. this requires opening our minds and setting aside habitual judgments. 3. empathic listening: we try to understand the situation from another person's perspective. this involves opening our hearts and using our feelings to tune into and appreciate someone else's point of view. 4. generative listening: we actively listen for the emergence of the best possible future outcome, creating a space for new and innovative ideas to take shape.4 (scharmer, 2018, p. 48) as i recovered from my traumatic birth experience, my nurse's unwavering commitment to listening played a crucial role in my ability to practice the skills i acquired to care for my son. our nicu journey gained attention in local media, prompting me to volunteer for our nicu and actively fundraise for its expansion (aho, 2010).5 the nicu transformed my heart into a space of healing and renewal, prompting a shift in my values. i no longer prioritized corporate success at any cost. f a m i l y v o i c e s giovanni in the nicu 2024 • developmental observer • 25 f a m i l y v o i c e s after completing our nicu journey, my focus shifted toward understanding the impact of leadership on shaping organizational culture. my personal experience as both a patient and a parent of a premature baby deepened my connection with nicu practitioners and heightened my interest in the dynamics of these relationships. long before the crisis of burnout in healthcare providers was as prevalent as it is today, my redefined purpose in life was to deeply care for nicu practitioners. the idea that a nicu parent could provide credible, professional leadership as an equal to physicians, nurses, occupational therapists, and technicians had yet to exist. intuition became my second pillar of leadership. in 2012, i began graduate school with the vision of a nicu parent leader reshaping health systems. though an unsubstantiated notion, my commitment to nicu practitioners, coupled with intuition learned from my nicu nurses, evolved over two years during my career transition. early exploration of the nicu parent leader role led to identifying crucial workforce skills, reinforcing the idea that nicu parents could apply pre-nicu experiences to serve maternal-infant health. i had a notion to empower nicu parents with transferable skills, fostering economic self-sufficiency beyond the nicu. at 14 years old, giovanni is 5’6” and 125 lbs (170 cm and 56.7 kg). he loves caring for others, a reflection of his own evolving recognition of his lived experience. giovanni has an extraordinary sense of humor and aspires to become a youtube star and professional video gamer. he attends an arts academy charter school that cultivates creative thinkers in visual and performing arts with a focus on career and technical education. as a ph.d. candidate in leadership studies at gonzaga university my dissertation explores the credibility of the nicu parent leader. as the founder and principal consultant of courageous steps, i aspire to exemplify profound listening skills cultivated during my nicu journey, offering valuable insights into this shared pain. at the heart of our collective journey through the nicu is the commitment of our nicu provider's practice of listening. nidcap trained staff impact babies and families. it was our nicu nurses' training in nidcap that led to my healing and courageous journey. the nidcap approach to observing and listening to babies and the parent's skills and developmental training extends beyond the nicu. for those of us who accept the invitation to serve as a patient leader and improve the way neonatal care is delivered, we have an incredible opportunity to pay nidcap forward for generations. references 1. burn-out an “occupational phenomenon”: international classification of diseases. (n.d.). retrieved december 7, 2023, from https://www.who.int/news/ item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases 2. coussons-read me. (2013). effects of prenatal stress on pregnancy and human development: mechanisms and pathways. obstetric medicine, 6(2), 52–57. https://doi. org/10.1177/1753495x12473751 3. bolton r. (1987). people skills: how to assert yourself, listen to others and resolve conflicts. simon & schuster. 4. scharmer co. (2018). the essentials of theory u: core principles and applications (first edition). bk, berrett-koehler publishers, inc., a bk business book. 5. aho j. (2010, january 8). early arrivals. herald and news. https://www.heraldandnews. com/top_story/early-arrivals/article_2fab2447-36c6-57a5-ac58-e4e8cd341dae.html giovanni (aged 13 years) and katie in january 2023 it’s easier and faster to reach a greater audience now, and that’s a good thing, but sometimes i miss the tactile experience of seeing and hearing the printing presses running, and holding the finished product. ks. what have you learned about nidcap during your years with the do? rc. everyone i have worked with at nidcap over the years has been wonderful, and they are a very caring group. as we rely more and more on technology, we lose some personal connectiveness and touch. what i have learned about nidcap is the practice of medicine, though rooted in science and technology (i.e. all the technology in a neonatal intensive care unit), can be practiced un-scientifically. after laying out many newsletters filled with many abstracts and research articles, i have no doubt the nidcap teachings are heavily rooted in science, but what i enjoy seeing is the touching/ caring/bonding, the un-scientific things that unite these parents and their children. and they all seem very grateful to have had the experience. ks. thank you, rob, for sharing these insights. i have learned a lot about you and look forward to working with you as the developmental observer continues to grow and to hear more about your creative ideas. (behind the scenes, continued from p. 22) 26 • 2024 • developmental observer i am from the children's hospital of fudan university where i am the deputy director of the nursing department of the hospital. i obtained a phd and now am a doctoral supervisor. i am also the chairman of the society of neonatal nursing of china medicine education association and have been engaged in neonatal nursing for more than 20 years. children's hospital of fudan university is a “stand alone” children's hospital. in 2017, it was approved as a national children's medical center. for over a decade, it has consistently held the top position in the list of best hospital specialties from fudan university and the best clinical disciplines from beijing university. the hospital serves as a diagnosis and treatment facility for difficult and critical pediatric diseases in china and as a training ground for top-level medical professionals. additionally, it possesses the ability for clinical research transformation in pediatrics. the hospital places great emphasis on the development of talents and technology, and highly values international exchanges. it maintains close ties with more than 40 international children's hospitals. the neonatal department of the children's hospital of fudan university was established in 1953. it has 200 beds, with a daily occupancy rate of over 160 inpatients. this department is among the first group of national clinical key specialties, serving as the specialized department for neonatal health care under the national health and health commission, an administrative government organization. it also serves as the national training base for neonatal specialists and is recognized as a key discipline of medicine in shanghai. additionally, the department serves as the referral center for critically ill newborns in shanghai. the key laboratories of neonatal diseases of the national health and health commission, the china newborn collaborative network (chnn), and the shanghai clinical quality control center for neonatal departments are based at the hospital. it is among the top neonatal medical centers, talent training centers, academic exchange centers, and scientific research bases in china. in 2022, approximately 10 million babies were born in china, with a prematurity rate that amounts to almost 7-8% of all newborns. all the babies are born in hospitals and doctors and midwives deliver them. the mothers spend two to five days in the hospital and receive training on how to breastfeed their babies, yet the rate of exclusive breastfeeding for six months remains low. newborn care is categorized as level 1-4 according to the international classification of levels of care. the average length of stay in the nicu varies depending on the institution. for us, in our nicu, due to the presence of numerous very premature infants, the hospital stay is somewhat lengthy. we are extending an invitation to parents to stay with their babies in the unit. an increasing number of institutions in china are participating in the transformation of the care model. the parents are capable of providing hands-on care for their baby. all the nurses possess a graduate qualification from a university or college. there is, however, no specific discipline for neonatal nursing in the university; neonatal nursing belongs to pediatric nursing. my nidcap journey in 2003, i started to learn nidcap through literature and became adept at understanding the impact of the environment on newborns, especially premature infants, as outlined in nidcap. we began to cover the incubators and protect the newborns in the nicu from light and sound to offer the most favorable environment for their growth and development. however, i didn't truly comprehend nidcap at that time. in 2007, i became the head nurse of the nicu, and realized that i had the responsibility and obligation to lead the nursing team in the nicu to provide the best possible care for the infants, to maximize their growth and development, to offer appropriate stimulation care, and to actively learn new care strategies. under the recommendation of professor cao yun in the global perspective on developmental care china xiaojing hu, phd, vice director, nidcap professional children’s hospital of fudan university in shanghai doi 10.14434/do.v17i1.37081 xiaojing hu and heidelise als 2024 • developmental observer • 27 department, i was fortunate to study nidcap with professor heidelise als. professor heidi came to china many times, and each time she taught us how to observe newborns, understand their needs, and provide them with the best support. i remember that our nicu environment at that time was still very rudimentary, but heidi's way of treating infants, behavior, and love amazed us. every time she observed the baby, she would stay for at least two hours, and although we were much younger and slightly tired, we admired her professionalism even more. i have immense respect for professor heidi and studied nidcap with her on and off for a considerable period of time. in 2019, i made a special trip to boston children's hospital for a few days of study, and subsequently engaged in an intensive course on nidcap observation and report writing with professor dorothy vittner for another few days. after returning from the united states, i continued to study nidcap online with professor heidi. i persisted for over a year in this manner and eventually obtained the nidcap professional certificate from professor heidi. i am extremely thrilled that heidi encouraged me to pursue my studies and become a nidcap professional. i hope to become a nidcap trainer and am following nikk conneman and dorothy vittner to learn about nidcap. i am currently sharing some basic knowledge of nidcap at china's newborn nursing conference and various other education programs. i hope to contribute to the future development of nidcap in china. the current situation and future expectations for nidcap in china due to the significant number of neonatal patients and the shortage of nursing staff, implementing the process of observation and report writing is challenging. in the nicu of our hospital, one nurse takes care of three to five infants every shift. i have thoroughly acquired the skill of observation and have produced numerous observation reports, yet it remains a challenge to carry out standardized observations in the current context in china by each bedside nurse. however, the act of observation is crucial; hence we opt for an observation without documentation approach, mandating nurses to conduct 20-30-minute observation of each infant during their shift. only through careful observation can we assess the developmental level and abilities of the infants and observe the response of the caregiver to the infants’ treatment. the caregiver can provide better care for the infants based on these observations. we acknowledge that it is not feasible for one nurse to handle the care of one infant per shift, but we are also working on enhancing the specific details of clinical care. we are working to involve more families in the care of newborns, with more parents engaging in this “kangaroo care” technique which helps to stabilize the clinical symptoms of infants. i am a postgraduate mentor, and the model of the synactive organization of behavioral development theory of nidcap also supports many studies on enhancing the stability of newborns in clinical practice which include family-centered care, kangaroo care, strategies to promote early full oral feeding, breastfeeding, and other related aspects. these specific measures can better contribute to the enhancement of infants' outcomes and the formation of stronger bonds between infants and their families. based on the results of clinical research, various nursing measures derived from the nidcap concept have demonstrated remarkable effects on newborns, with a particular focus on small premature infants. however, we still have a lot to learn from the professionals of the nidcap federation (nfi), and we still need to learn and communicate with neonatal professionals from various international hospitals. ultimately, we hope to apply what we have learned to benefit small babies. professor heidi, the board of directors of the nfi, and all the nidcap trainers have spared no effort to improve the prognosis of newborns, especially premature infants, worldwide through the nidcap method. it is the greatest kindness, and we also hope to fully implement nidcap in china to commemorate professor heidi and truly carry forward the nidcap approach to care.. kangaroo care visit at home 28 • 2024 • developmental observer n i d c a p o n t h e w e b nidcap training centers – facebook pages world prematurity day was a focus in november for the nidcap training centers. across the globe the aim is to raise awareness of preterm birth and the subsequent challenges faced by infants and their families. nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/profile.php?id=100069769423304 https://www.facebook.com/nidcapaustralia https://www.facebook.com/nidcap 2024 • developmental observer • 29 n i d c a p o n t h e w e b nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/profile.php?id=100063585520167 https://www.facebook.com/nidcap.sweden https://www.facebook.com/groups/3103556629927874 https://www.facebook.com/profile.php?id=100069429309444 30 • 2024 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-director: bonni moyer, mspt contact: annette villaverde email: annette.villaverde@ commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc and jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: nidcapchicago@gmail.com national nidcap training center boston children’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard. edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: nadine griffiths, mn and hannah dalrymple, mbbs contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@ health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattingerjürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierrebru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@ uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: tenna gladbo salmonsen, rn, mscn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@ rm.dk danish nidcap training and development center, copenhagen copenhagen university hospital, rigshospitalet copenhagen, denmark director: jannie haaber, rn co-director: porntiva poorisrisak, md, phd contact: jannie haaber, rn, nidcap trainer email: nidcap.rigshospitalet@ regionh.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: jacques sizun, md co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr saint-brieuc nidcap training center saint-brieuc – paimpol – tréguier hospital center saint-brieuc, france director: marie-cécile androgarcon, md contact: aurélie guillou, rn email: aurelie.guillou@armorsante. bzh 2024 • developmental observer • 31 n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med. uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: alberto berardi, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail. com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@ gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid. org sant joan de déu barcelona nidcap training center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: agnes linnér, md, phd co-director: siri lilliesköld, rn, ms contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: beverley hicks, ot email: beverleyann.hicks@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: daliasil1960@gmail.com asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 22 • 2024 • developmental observer them during medical examinations and procedures. nidcap professionals work clinically at the cot side with parents and other health professionals, showing them their observations, reflections and supporting them to see clearly the behaviors of the baby. this enables the family and healthcare professionals to gain knowledge and skills and apply this to the care of the infant. bedside observations provide insights into the infant’s response and needs. this hands-on learning approach is crucial for developing a thorough understanding of developmental supportive care in our unit. it improves communication skills, decision making in care, and collaboration with parents, and promotes multidisciplinary teamwork in support of the infant’s development. this statement by a nurse supports our work. "through increased awareness and understanding of the nidcap approach, i have been able to optimize and structure the environment, enabling me to effectively support each child with individually tailored care and nurturing. the enhanced skills have resulted in an experience of being able to fulfill my core responsibilities in a much more qualified manner." the team at danish nidcap training and development center, aarhus: nidcap trainer: eva jørgensen, rn training center director: tine brink henriksen, md, professor, consultant chair, phd training center co-director: tenna gladbo salmonsen, rn, mscn, nidcap professional. contact: eva jørgensen; nidcaptrainer@gmail.com tenna gladbo; tennsalm@rm.dk danish nidcap training and development center, copenhagen the neonatal intensive care unit (nicu) in copenhagen was the first nicu in denmark. it is also the largest nicu and the only level 4 unit in the country. our nidcap journey in copenhagen began in late 1990 when nurse specialist janne weis and nurse dorthe mai were introduced to nidcap. before then we had a developmental and family centered care group of dedicated staff who worked with family focused care, minimal touch, and early discharge. dorthe mai was a leader in implementing hospital-assisted home care after early discharge in denmark. the first family in denmark to use early discharge was in 1997 provided by dorthe mai and the home care team from our unit. in the year 2000, janne weis and dorte mai became nidcap professionals with agneta kleberg as their nidcap trainer and mentor. a new friendship and lifelong partnership were established with agneta kleberg. her dedication and contribution as a person and as a professional have had a very positive and important impact of the strategy, vision, and goals for our nicu and nidcap journey. in 2005, we went from an open bay unit to two family rooms with one parent bed next to the infant. it was a significant step towards more family centered care and strengthened the partnership between the healthcare professionals and the family. this move facilitated the families to be actively involved in the care for their infants, enabled shared decision-making and more individualized care plans for the infant and the family. over the years the nidcap team expanded janny hoegh and jannie haaber, two nurses who became nidcap professionals. janne weis completed her ph.d on family focused and guided conversations using a semi structured conversation form with a focus on partnership. this represented a huge milestone in the unit’s journey towards enhancing family centered care in practice. nidcap certificated unit becoming a nidcap certified unit in 2015 was undoubtedly a significant achievement and a testament to the unit’s commitment to provide high-quality individualized developmental care for infants and families. the accomplishment was a culmination of years of dedication, hard work and support and engagement from the leadership. without leadership support it wouldn’t have been possible. the nidcap nursery program with its 121 points is a comprehensive evaluation framework that provided a structured approach for identifying areas of improvement and setting of new goals for enhancing care for infants and families. it enabled us to recognize the units existing strengths. celebration of our achievements, both big and small, is very important for boosting the morale, enhancing teamwork, and maintaining motivation for providing high quality care. we continue to celebrate in our daily work. in 2020, the unit was re-certified in the nidcap nursery program. re-certification is a lifelong commitment and an ongoing evaluation and reflection of how we take care of infants, families, and each other. now and in the future. the nidcap jannie haaber rn, intensive care nurse, nidcap trainer and director of the nidcap training center and porntiva poorisrisak phd, consultant neonatologist, apib professional, co-director of the nidcap training center doi:10.14434/dov17i2.38132 2024 • developmental observer • 23 nursery program and guidelines will be used in preparation for our new childrens hospital mary elizabeth hospitalfor children, teens, and expecting families for children. since 2015, the unit has had an interdisciplinary nidcap group, consisting of a team of experienced healthcare professionals all working to support development care in a family centered way. the group is leaded by jannie haaber (rn, nidcap trainer) and porntiva poorisrisak (neonatologist, apib professional). since 2020, the nidcap team has had a parent consultant, who first of all is mother of a preterm infant and also works in her professional life as a family advisor for families with preterm infants. our parent consultant is member of the advisory board in the danish organization for preterm infants and their families. inclusion of a parent consultant in the nidcap group together with a parent consultant in the leader group of the unit, reflects a commitment to prioritizing the family’s needs and experiences. hopefully contributing to more responsive and compassionate care for infants and their families during their stay in the unit. becoming a nidcap training center nidcap nursery certification was the first milestone reached in preparation to become a nidcap training center. the designation as a nidcap training center signifies a recognition of the unit’s commitment to be role model for other healthcare professionals and a responsibility to share knowledge and expertise both within and beyond our own nicu. by offering education and training our unit now has the possibility and responsibility to empower healthcare professionals to integrate nidcap into their own practiceto improve wellbeing, development and outcomes for infants and families. leadership support and involvement is crucial for a successful implementation of becoming a nidcap training center. and luckily there has been a huge support from the leaders of the unit and the hospital. support to ensure resources, to address barriers proactively and to inspire and motivate staff being a part of the journey and pride of the achievement as a team. in 2019, jannie haaber started as a nidcap trainer in training and porntiva poorisrisak became a apib professional in training at the same time as suggested and supported by agneta kleberg. the decision to have jannie and porntiva work together on apib training was a strategic move, groundwork for their future leadership roles within the nidcap center. of course, again with great support from head of department morten breindahl and head nurse of department sanne allermann beck who are the medical and nursing directors in the nidcap center, jannie haaber is director and porntiva poorisriak is co-director of the center. during the process of becoming a nidcap trainer and apib professionals jannie and porntiva had a very close collaboration with nikk conneman, nidcap and apib master trainer and pernilla stenman (nidcap trainer in training at that time) from lund in sweden. having supportive partners throughout the journey has undoubtedly enhanced the experience, made possibilities for feedback, reflection and provided encouragement to keep on. a partner in crime is very important throughout the journey to become a nidcap trainer and to establish a nidcap center. sharing, caring and exchange. in august 2023, we reached the milestone to become a nidcap training center where jannie finished as nidcap trainer and we could celebrate having two more nidcap professionals in the unitlaerke johanne bager and maria clemenn kaas, two intensive care nurses. the center was officially opened on 26 january 2024, the same day celebrated with a conference day. all nicus in denmark and collaborative pediatric units at the hospitals were invited. there were 130 healthcare professionals from all over the country and the nidcap team from lund/malmo attended. with fantastic speeches from agneta kleberg, nikk conneman, stina klemming and deborah buehler the participants were enriched with an understanding of nidcap, architecture of brain, brain protection, the importance of keeping family together and support skin to skin contact from the very beginning. agneta received a welldeserved standing ovation for her tremendous work, her expertise, passion, and impact on countless infants, families, and professionals she has trained. at the end of the day the ribbon was cut and the danish center nidcap training and development center, nidcap team 24 • 2024 • developmental observer copenhagen was officially opened. afterwards we celebrated with music, champagne, and cake. collaboration for several years there has been a danish nidcap center in aarhus with eva joergensen as nidcap trainer and tenna samuelsen and tine brink as directors. having a national nidcap center nearby should not be undervalued and makes opportunities for support, shared learning and collaboration in joint projects and initiatives that can have significant impact locally and nationally. already we have worked together describing non-pharmalogical approach for lisa (less invasive surfactant administration) procedure as part of a phd project. we are looking forward to more future interventions or project together. education, projects, and research as mentioned, being a nidcap certified unit and a center we are committed to being role models. in the beginning of april, the nurse leadership were the first group in the unit to complete family infants neurodevelopmental education (fine 1). fine 1 will be an obligatory part of the nurse’s development and training program in the unit. in spring 2024, the interdisciplinary leadership, jannie and porntiva will make plans for fine and nidcap education in the unit. we are looking very much forward to collaborating with other units and hospitals in the future. qualitive improvements and research is a high priority in the unit: during the last year we have established group sessions for mothers, fathers and families which are provided once a week. all group sessions are supported by members of the nidcap group. there has been fantastic feedback from parents and families. a new protocol for golden hour, day and week has been made for extreme premature infants and a new protocol for skin-to-skin contacts for the youngest born before ga 25 weeks. we also are in the beginning of working structurally on how to keep families together with cpap treatment at the delivery room to prevent hospitalization. we begin with the latest preterm and full-term infants. nidcap member ragnhild maastrup, rn, phd and ibclc specialist has a leading role in our neonatal interdisciplinary research. ragnhild has undertaken and still does research about preterm infants and breastfeeding. in the nidcap group we have at the moment three nurse phd students. rikke steenkjaer has focused on pediatric delirium. she and the team are researching non-pharmacologic interventions in line with nidcap principles to prevent and manage pediatric delirium in critically ill children aged 0-17 years. international picu experts agreed on a bundle of interventions such as developing daily structure, adjusting light exposure according to the time of day, scheduling time for sleep, providing eyeglasses and hearing aids if appropriate, and family involvement. joan neergaard larsen and team are researching couplet care, keeping families together. the project aims to prepare for a couplet care intervention in 2026, when all neonatal, paediatric, and obstetric departments at our hospital will relocate to the new mary elizabeth’s hospital. the new hospital will have single-family rooms with the ambition of keeping families together. mette petersen has just recently been admitted as phd student. this phd project is a national intervention study aiming to support first-time fathers (ftfs) of preterm infants in early parenthood. the title of the phd project is development and process evaluation of a family healthcare intervention supporting first-time fathers of premature infants admitted to a neonatal unit and their transition to everyday life at home. all above mentioned are just a few of initiatives we have been or are working on. our future goals will continuously be to provide the best possible care and treatment for infants and familiesthanks to nidcap and the network, all the dedicated staff in our unit, trainers, inspiring people, and research. contact: jannie haaber – nidcap.rigshospitalet@region.dk becoming a nidcap training center 12 • 2025 • developmental observer m i percepción de la formación en el marco del modelo nidcap es la de un gradual recorrido de creciente acercamiento a las necesidades del bebé y su familia, así como una más profunda comprensión de la incidencia que tiene en ellas el equipo de profesionales que les cuida. dicha idiosincrasia – la de gradual y creciente – es indispensable en un proceso de formación cuyo objetivo es comprender y cuidar la individualidad del bebé. la formación del profesional nidcap consta de diversas fases.1 una vez que el profesional en formación (en adelante, "aprendiz") ha demostrado una apropiada conceptualización del comportamiento del bebé, y es capaz de formular adecuadamente sus observaciones y recomendaciones de cuidados, la fase siguiente en su formación es la práctica avanzada (en adelante, "pa"). la pa consiste en la observación periódica, siguiendo la metodología aprendida, del bebé y su familia, desde el ingreso a la unidad de cuidados intensivos neonatales (ucin) hasta el alta hospitalaria y la transición al hogar.2 la pa es un importante punto de inflexión en el proceso de formación y un componente singular del mismo. aprendices y entrenadores llegamos a la pa con un buen grado de ilusión y expectativa. acompañados, tal vez, de interrogantes: ¿seremos capaces de crear una genuina relación de apoyo y colaboración con la familia? ¿de qué manera evolucionará la misma? ¿cuáles serán sus matices, a medida que transcurran las semanas? ¿de qué forma expresaremos, sea por escrito como a través de acciones y hechos, nuestro compromiso con el cuidado del bebé y su familia, y con el proceso de formación en sí mismo? ¿podremos construir y asegurar esa envoltura contenedora al bebé, a sus padres, al aprendiz y a los profesionales de la ucin, que propugna el modelo nidcap?3 estas preguntas nos invitan a reflexionar sobre aquellas oportunidades menos aparentes o explícitas, aún por descubrir, que esta fase de la formación nos proporciona a aprendices y a entrenadores en igual medida. si llegamos con curiosidad, con la mente y el corazón abiertos, ¿qué "tesoros escondidos" podremos descubrir a partir de nuestra experiencia con la pa? quisiera plantear en este artículo algunos de los que he descubierto a partir de mis propias experiencias de formación. una llamada a la individualidad la pa abarca varias semanas. se inicia en los primeros días tras el nacimiento, sigue en la hospitalización y el alta, y finaliza en el entorno familiar. durante todo ese tiempo, el seguimiento longitudinal y periódico del bebé a través de las observaciones nidcap, nos aporta un mejor conocimiento de sus necesidades y nos compromete de una nueva manera con la promoción de su constante evolución y desarrollo. la pa pone a prueba nuestra capacidad de adoptar, desarrollar y mantener a través del tiempo, un enfoque individualizado del cuidado. esta etapa de la formación nos convoca a ajustar y afinar más aún esa capacidad, que veníamos desarrollando ya en etapas anteriores de la misma. nos impulsa a adecuar más cabalmente nuestro análisis y a articular nuestras recomendaciones para este bebé que seguimos – que es específico y único. nos sitúa en la necesidad de amoldarlas a sus capacidades y vulnerabilidades; a su evolución clínica; a su familia; a sus circunstancias irrepetibles y singulares. ser capaz de asegurar la individualización del cuidado1 es la competencia central a desarrollar en la formación nidcap. debido a ello, durante la pa, nuestra capacidad de mantener esa perspectiva de cambio y evolución que propugna la teoría sinactiva del desarrollo,3 se hace imprescindible y se pone en mayor evidencia. importa tener presente que, como todos sabemos, de esta teoría surge el modelo nidcap. por el hecho de ser un pilar básico del modelo que estudiamos, es necesario que el aprendiz haya comenzado a desarrollar esta competencia ya en etapas tempranas de su formación, anteriores a la pa. no obstante, la habilidad del aprendiz de individualizar las recomendaciones y propuestas de cuidado se hace visible con mayor claridad durante la pa. en consecuencia, el práctica avanzada de la formación nidcap: tesoros escondidos para aprendices y entrenadores dalia silberstein, phd, rn doi: 10.14434/do.v18i2.41642nidcap trainer, israel nidcap training center reflexionando sobre las observaciones durante la práctica avanzada 2025 • developmental observer • 13 requisito de contar con la capacidad de individualizar el cuidado emerge aún con mayor magnitud en esta fase de la formación. una situación que ejemplifica lo que señalo es la recomendación de cuidados "mantener el contacto físico cercano con su madre”. se trata de una recomendación presente en todas y cada una de las etapas que ha vivido el bebé desde su ingreso en la unidad. ha sido relevante y crucial para el bebé al que estamos siguiendo desde el mismo momento de nacer, y constituye una necesidad que está presente, sin excepción, en cada una de las etapas de su hospitalización.4 sin embargo, la manera de abordarla y actualizarla para el bebé y su familia es distinta en cada etapa de su desarrollo. hemos de anticipar que el abordaje de esa necesidad medular se transforme y evolucione en cada una de las observaciones que componen la pa. es, por tanto, de gran importancia que en dichas observaciones que el aprendiz formula y el entrenador evalúa seamos capaces de identificar y poner en evidencia esa singular evolución que presenta cada bebé, cada familia. así, ateniéndonos al ejemplo anterior, si se tratase de un bebé en su segundo día de vida que se encuentra fisiológicamente inestable y medicamente lábil, puede que la recomendación "universal" antes propuesta, tome la forma singular de: "considera guiar a los padres en el modo de ayudar a su bebé a mantener una posición relajada, posando suavemente sus manos alrededor de su cuerpo, de tal forma que los pies y los brazos del bebé estén levemente flexionados y cercanos al cuerpo”. en observaciones futuras hemos de formular claramente (el aprendiz) e identificar (el entrenador) como aquella necesidad incuestionable, constante e inamovible, de "mantener el contacto físico cercano con su madre”, adquiere distintos matices. tales matices son la manifestación inequívoca la de individualización. por ello, deben quedar reflejados en la pa en unas recomendaciones de cuidados individualizadas que varían en función de los cambios producidos en el bebé y sus circunstancias, por ejemplo: su situación clínica; su capacidad de estar alerta o de organizar su postura; la competencia de sus padres; etc. en definitiva, tal como he tratado de argumentar, la pa nos confronta, tanto a aprendices como a entrenadores, con el reto de la individualización. es en esta etapa del aprendizaje en el que con mayor claridad podemos poner de manifiesto nuestra capacidad de percibir el cuidado de manera individualizada. este es el primero de los tesoros escondidos de la pa: la oportunidad sin igual que esta vía de aprendizaje ofrece al aprendiz y al entrenador. al aprendiz le permite demostrar su competencia para individualizar sus apreciaciones y sugerencias. a su vez, le ofrece al entrenador la posibilidad de identificar y evaluar el grado en que dicha competencia está en uso durante el trabajo del aprendiz con él bebé y la familia. usos y desusos del lenguaje tal como he señalado, durante la pa se observa al bebé en el transcurso de varias semanas. esa suerte de "relato" a través del tiempo acerca del bebé en interacción con su entorno, con su familia, y con los cuidadores profesionales, proporciona un contexto en el que examinar nuestro lenguaje y reconocernos en él. el texto de las observaciones brinda una oportunidad más para identificar la medida en que logramos ser facilitadores del desarrollo. la pa posibilita una mirada amplia e integradora. es en esta etapa de la formación nidcap en la que podemos examinar de forma más completa nuestro discurso y el lenguaje que manejamos. abordaré esta percepción personal brevemente, con relación a tres ejes del cuidado que ya he mencionado: el bebé; los padres y los cuidadores profesionales. con relación al bebé, la pa nos sitúa en la necesidad de escoger con sensibilidad las palabras y expresiones que utilizamos para transmitir aquello que deseamos comunicar y enfatizar acerca del bebé y su desarrollo. por ello, nos insta a prestar atención a cuán cabalmente se refleja en el lenguaje que utilizamos nuestra percepción del bebé como un ser competente.5,6 en consecuencia, nos induce a explorar si hemos sido capaces de reflejar tanto sus fortalezas como sus vulnerabilidades. explorar el lenguaje que utilizamos en la pa supone, en definitiva, valorar en qué medida aquello que expresamos se adhiere al modelo de cuidados que propugnamos. con relación a los padres y cuidadores profesionales, las directrices del programa de formación1 nos instan a articular informes nidcap que: resulten claros y sostenedores para ellos; que les habiliten para comprender el lenguaje comportamental del bebé; que fomenten la creatividad y confianza de los padres y cuidadores para apoyar y promover el desarrollo del en definitiva, tal como he tratado de argumentar, la pa nos confronta, tanto a aprendices como a entrenadores, con el reto de la individualización. es en esta etapa del aprendizaje en el que con mayor claridad podemos poner de manifiesto nuestra capacidad de percibir el cuidado de manera individualizada. 14 • 2025 • developmental observer bebé. las directrices recomiendan, además, que aquello que comunicamos y escribimos impulse a los padres a sentir placer y seguridad en el ejercicio de su rol parental en el complejo entorno de la unidad neonatal.2 nada de lo anterior puede lograrse sin el uso reflexivo de nuestro propio lenguaje, tanto en los informes escritos que componen la pa, como en el diálogo que entablamos con padres e integrantes del equipo profesional de la unidad. el lenguaje que utilizamos puede contribuir al crecimiento profesional y a la transformación de la cultura de cuidados de la unidad. por todo ello planteo que, a la hora de valorar la pa, es conveniente responder a algunas cuestiones centrales en nuestro compromiso de apoyo al desarrollo del bebé. entre ellas destacan, a mi entender, las siguientes: ¿hemos sido capaces de transmitir fortalezas y vulnerabilidades inherentes al lenguaje comportamental del bebé? ¿hemos sido suficientemente hábiles al articular los próximos pasos en su trayectoria de desarrollo? ¿hemos hecho acopio de la sensibilidad y delicadeza necesarias para plantear unas recomendaciones de cuidados que contribuyan a su desarrollo? finalmente, cabe también preguntarse si hemos realizado el indispensable proceso de introspección que nos permite priorizar nuestro rol de guías y posibilitadores del cuidado7, como parte integral de nuestra identidad profesional. aquí yace, entonces, un segundo tesoro escondido de la pa: el lenguaje utilizado al escribir las observaciones y comunicarlas, ofrece una ventana desde la cual apreciar las percepciones más genuinas y profundas que tenemos del cuidado que brindamos al bebé y su familia en el marco del modelo nidcap. construir el diálogo aprendices y entrenadores incorporan al proceso de formación nidcap sus propias percepciones y perspectivas del cuidado. como entrenadores nos enfrentamos al reto de ser cálidos, sensibles y respetuosos, de identificar y comprender las percepciones de nuestros alumnos y hacer explícitas al mismo tiempo las nuestras, sin imponerlas y sin asumir que se dan por sentadas. una cuestión que me he preguntado desde mi rol como entrenadora nidcap es la siguiente: ¿cómo puede iniciarse, promoverse y mantenerse vivo un diálogo que es necesario y vital, en una formación que por lo menos en parte, se lleva a cabo a distancia? en mi caso, he utilizado el recurso de notas escritas intercaladas en el texto del aprendiz. he utilizado dichas notas como una primera y muy básica plataforma desde la cual construir una base para el dialogo que se establecerá después, a través de conversaciones en persona u online. estas notas me han proporcionado un modesto cimiento desde el cual propiciar un diálogo reflexivo, abierto, y esclarecedor entre aprendiz y entrenador. he aprendido, a su vez, que algunos aprendices pueden estar poco familiarizados con este "método" y que, acaso, puedan sentir cierta incomodidad al recibir un trabajo que incluye numerosas notas. viniendo de sistemas educativos más o menos tradicionales, muchos hemos sido educados en la premisa que cuanto más impecable y con menos notas se nos devuelve un trabajo, mejor. un trabajo que contiene muchas notas del profesor o mentor es – según dicha concepción – un trabajo menos logrado. sin embargo, desde mi experiencia, las notas son vitales para propiciar la reflexión y el diálogo, y es por ello que procuro incluirlas. no hacerlo significaría, desde mi punto de vista, renunciar a un intercambio más abierto de ideas sobre lo observado acerca del bebé y su familia. a menudo he sentido la necesidad de explicar este punto de vista, y asegurar al aprendiz que estas notas son un elemento ineludible en la construcción de un dialogo más libre, que dará lugar a un más profundo aprendizaje. sin el intercambio y la mutua exposición de puntos de vista, el proceso de aprendizaje se empobrece. desde mi perspectiva, es en esas notas del entrenador en las que radica otro tesoro escondido en la pa: el uso de un instrumento sencillo como plataforma desde la cual propiciar el diálogo. enhebrar reflexiones la práctica del modelo nidcap consiste en observar, articular lo que hemos observado y reflexionar acerca de ello. las observaciones secuenciales de la pa nos permiten mirar de manera estructurada e individualizada el comportamiento del bebé y sus necesidades de desarrollo a lo largo del tiempo. es la lectura de dichas observaciones la que permite al entrenador valorar lo que el aprendiz ha observado e inferido. sin embargo, son las reflexiones escritas que se adjuntan a cada una de las observaciones de la pa las que otorgan al entrenador un atisbo de lo que el aprendiz ha sentido y experimentado. la reflexión, sustentada en los apartados que aporta la denominada "journal page"8 de la formación nidcap, proporciona una ventana única al mundo interior del cuidador, en este caso el aprendiz. la oportunidad de reflexionar que nos otorga la pa pone a prueba nuestra capacidad de pensar más libremente, de quitar desde mi perspectiva, es en esas notas del entrenador en las que radica otro tesoro escondido en la pa: el uso de un instrumento sencillo como plataforma desde la cual propiciar el diálogo. 2025 • developmental observer • 15 vallas a nuestra mente y plasmar con espontaneidad aquellos pensamientos que la observación ha despertado en nosotros. puede que, en esa implícita invitación de la pa a la libre reflexión, radique su aparente complejidad. no es inusual que los aprendices manifiesten una cierta "dificultad para reflexionar". de hecho, a menudo han preguntado qué tipo de pensamientos sería pertinente incluir en esa sección de la pa. son la necesidad y el deseo de mirar una situación aparentemente conocida desde nuevas perspectivas, los que desencadenan la exigencia de reflexionar sobre la práctica profesional. hacerlo requiere cierta dosis de introspección, sensibilidad y tolerancia. por sobre todas las cosas, reflexionar significa estar en disposición de hacer una pausa, de frenar. quizás en cada uno de estos atributos radica la dificultad de ejercitar la reflexión que se manifiesta, a veces, durante el proceso de formación. sin embargo, el imperativo de reflexionar que exige la formación nidcap es más sencillo de lo que pueda parecer a primera vista, si se aborda con genuina libertad. mi consejo es aproximarnos al ejercicio de la reflexión con la mente – y sobre todo el corazón – abiertos. permitirnos la libertad de considerar todo aquello que nos viene en mente a partir de la observación que hemos hecho. que no impongamos límites estrictos, ni atendamos a un determinado método o estructura al hacerlo. que hagamos un pequeño inventario de los pensamientos y sentimientos que cada observación ha despertado en nosotros. llegados a este punto, que escojamos en cuál de ellos nos gustaría detenernos a reflexionar por escrito. bastaría, desde mi punto de vista, con que el aprendiz aborde cada vez uno o dos "temas" de su inventario. así, cada observación y su correspondiente reflexión nos obsequiarían seguramente con el tesoro escondido de descubrir un nuevo matiz, una nueva faceta en nuestro aprendiz. es así como al leer la pa, las reflexiones del aprendiz que acompañan las distintas observaciones se enhebran a través de nuestra lectura en una suerte de collar imaginario. las reflexiones nos proporcionan una herramienta más para para apreciar las diversas maneras en las que el aprendiz percibe al bebé, su trayectoria de desarrollo y las interacciones de cuidados que experimenta. cultivar el orgullo uno de los principales objetivos de la pa es que el aprendiz aprenda a apoyar al bebé y su familia, así como al equipo profesional que colabora con ellos, para ayudarles a sentirse más competentes para cuidar a su bebé y favorecer su desarrollo.1 en mi práctica como enfermera desde la perspectiva del modelo nidcap, he identificado que una de las maneras más apreciadas y eficaces para brindar ese tipo de apoyo es cultivando el sentido del orgullo, tanto en los padres como en los profesionales. son muchos los motivos para sentir orgullo y satisfacción en el día a día de una unidad neonatal. por ejemplo: por los cuidados que se brindan; por la capacidad de individualizar las decisiones; por mantener el foco asistencial en el bebé y su familia; por las incipientes capacidades que día a día va mostrando el bebé, a pesar de la fragilidad de su prematuridad o de las complejidades médicas que pueda presentar. la pa, con su metódico seguimiento del bebé a lo largo de varias semanas, nos permite situar ese orgullo en un primer plano, nos ofrece un ámbito en el que regocijarnos (tanto padres como profesionales) en los logros del bebé. la pa nos invita a enfatizar la alegría de formar parte del esfuerzo conjunto de ayudar a ese bebé y su familia a expresar su más óptimo potencial de desarrollo. en el complejo entorno de la ucin, donde lo urgente puede a menudo quitar lugar a lo importante, la pa nos obsequia con otro pequeño tesoro: un contexto donde detenernos, destacar y cultivar la alegría y el orgullo por el bebé que cuidamos. conclusión la pa de la formación nidcap proporciona una experiencia llena de oportunidades de aprendizaje tanto para aprendices como para entrenadores. adquirir mejor competencia y habilidad para individualizar, utilizar más adecuadamente el lenguaje, reflexionar, fomentar el diálogo y cultivar el orgullo son desde mi perspectiva algunas de las más destacadas. no obstante, las nociones y competencias que afianzamos en esta etapa de la formación no se limitan exclusivamente al ámbito de la pa, sino que, de hecho, la trascienden. si somos capaces de proyectar más allá esas nociones y competencias, podremos ejercitarlas e implementarlas en otros contextos de nuestro ejercicio profesional. de esta manera, beneficiaremos y enriqueceremos cada una de las interacciones de cuidados en las que participemos, y cada una de las experiencias de aprendizaje que propiciemos. en este sentido, la pa encierra la potencialidad de convertirnos no solamente en profesionales nidcap, sino también en mejores cuidadores en el marco del equipo multidisciplinar de cuidados de la unidad neonatal. agradecimientos agradezco de corazón a maría maestro y josep perapoch, de la federación internacional nidcap, por aportarme sus valiosas reflexiones, incorporadas a este manuscrito. y a consuelo lópez, de la universidad de cádiz, por revisar este trabajo y sugerir importantes mejoras al texto. bibliografía 1. als h. program guide. newborn individualized developmental care and assessment program (nidcap): an education and training program for health care professionals. copyright, nidcap federation international, 1986, rev 2009. 2. als, h. guidelines for advanced nidcap practicum: following an infant and family from admission to discharge and transition to the home. copyright nidcap federation international, 2010. 3. als h. toward a synactive theory of development: promise for the assessment and support of infant individuality. infant ment health j. 1982; 3(4):229–43. doi: co;2-h 10.1002/10970355(198224)3:43.0. 4. flacking r, lehtonen l, thomson g, axelin a, ahlqvist s, moran v et al. closeness and separation in neonatal intensive care. acta paediatrica, 2012; 101, 1032–1037. 5. brazelton tb. preface. pediatrics, 2005;113, 632-633. 6. tronick e. the neurobehavioral and social-emotional development of infants and children. 2007; w. w. norton & company. new york. london. 7. als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology, 1997; 21 (3):178-189. 8. als h. documentation of nidcap observations: journal page. copyright nidcap federation international, 2018. 2025 • developmental observer • 21 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion / relevance to nidcap collaboration with the administration is the way to consolidate the model in all ics hospitals. together with the sant joan de deu group of hospitals, we provide care for over 70% of very premature babies in the catalan health system. our goal is to improve communication with the administration to establish nidcap as a standardized model across all units in catalonia, and hopefully spain. collaboration with the administration facilitates conducting research studies on the implementation of the model. this collaboration also supports initiatives aimed at improving training skills. we believe that sharing our experience with other regions of the state can serve as an example and an encouragement to promote similar programs. the impact of neurodevelopmental observations of preterm infants such as those offered in the nidcap program is still debated. by supporting oral feeding development, nidcap observations could enhance breast milk feeding at discharge of very preterm infants. aim to describe breast milk feeding at discharge among very preterm infants according to the level of nidcap implementation in neonatal units. materials and methods using the french national population-based epipage-2 cohort, implementation of nidcap in each of 11 nidcap neonatal units was defined as the proportion of very preterm infants (< 32 weeks’ gestation) who had at least one nidcap observation during hospitalization. breast milk feeding at discharge -partial, breast/bottle exclusive, and breast only exclusivewas evaluated after adjustment on maternal and neonatal characteristics, and unit policies to support lactating mothers. results among 569 very preterm infants included, 14% (78/569) had at least one observation during hospitalization. implementation was defined as low in nine units and high in two units, with 7% (extremes: 0-13%) and 86% (75 and 100%) of infants having at least one observation, respectively. breast milk feeding at discharge was reported in 55% of infants. in neonatal units with low nidcap implementation vs high, we observed 25%/6% of partial breast milk feeding at discharge, 16%/24% of breast/bottle exclusive, and 14%/28% of breast only exclusive. high nidcap implementation was associated with higher proportions of exclusive only breastbreast milk feeding at discharge: adjusted odds ratio 4.72 (95% ci 2.79-7.99). conclusion/relevance for nidcap the level of nidcap implementation was associated with higher rates of breast milk feeding at discharge exclusively at breast. investment of professionals and families in very preterm infants’ observation could be an effective strategy to support exclusive breast milk feeding at discharge in this vulnerable population. nidcap implementation in neonatal units and breast milk feeding at discharge: the epipage-2 cohort study mitha a1,2, kana g1, marchand l1, lescure s3, pierrat v1,4 1université paris cité, epidemiology and statistics research center/cress, obstetrical, perinatal and pediatric epidemiology research team (epopé), inserm, inrae, f-75004 paris, france. 2division of clinical epidemiology, department of medicine solna, karolinska institutet, se17176 stockholm, sweden 3department of neonatal medicine, toulouse university hospital, toulouse, france 4department of neonatalogy, chi créteil, f-94028 créteil, france doi: 10.14434/do.v18i1.40896 20 • 2024 • developmental observer o rganisms, by definition, are made of interconnected organs that perform specific functions. here we focus on one particularly magnificent organ – the brain. the human brain is an organ that makes a variety of products. with receptors tuned to the world outside the body, the brain makes percepts such as colors, temperatures and tastes. other receptors tuned to the world inside the body, stimulate the brain to create sensations such as hunger, thirst, and fulfillments. the brain metabolizes experiences and produces thoughts. it secretes emotions. yet, the majority of the processing of the nervous system is involved in making movements. movement is the stuff of behavior. and behavior is the stuff of nidcap. to make a nidcap observation is to see a world of movements on multiple levels, all manifested by a baby organism. synactive theory delineates movements in three domains: motor, autonomic, and regulatory.1,2 the motor domain comprises limb movements and other actions that are typically tagged as “behavior”. but the autonomic functions that we observe are also behavioral movements: respiratory movements of the diaphragm and beating movements of the heart muscle, for example. similarly, the regulatory domain is full of movements: those of muscles that alter facial expression and flare nostrils, as well as the tiny muscles that can modulate skin tones which signal changes in state. synchronies among limb movements, heartrate, and breathing function as a total regulatory dynamic. together, we use these movements to recognize and interpret “the voice of the infant”. the goals of developmental care are served by our understanding of the movements that constitute behavior, for this is our window on the states, status, and progress of a baby. to understand better, we must ask: what neural structures and organization constitute the motor system? in its neural organization, the adult human motor system is both hierarchical and distributed. top billing goes to the primary motor cortex (also known as m1) which occupies a prominent region of cerebral cortex. m1 arches from one side of the brain to the other like the headband of a pair of headphones. figure 1 depicts the band of m1, just anterior to the central sulcus. the cerebral cortex is one sheet of cells comprising six layers. the sheet is crumpled together to fit within the skull, thus creating the ridges and valleys (gyri and sulci) defining the human brain’s appearance. there’s a spatial representation of the body along m1’s surface. head and face occupy the most lateral positions; the rest of body is represented along m1 in orderly fashion, creating a map of what is controlled where. from layer v of primary motor cortex (m1), axons of the large, “pyramidal” neurons gather to form the corticospinal tract (cst) which extends down into the brain and beyond. the cst contains the longest axons in the central nervous system, reaching from cortex to the sacral spinal cord. this white matter (myelinated) tract is not a simple ‘straight shot’ to the base of central nervous system. for many of the neurons, there are terminals and loops within the brain. these include connections in the subcortical basal ganglia and the thalamus. along its path, the cst also connects in the hindbrain (pons and medulla). it gets inputs from cerebellum, one of the brain f r o m t h e s c i e n c e d e s k doi: 10.14434/do.v17i3.39755 reflecting on motor cortex and its place in developmental care jeffrey r. alberts, phd indiana university, usa, nfi science committee, associate editor for science "movement is the stuff of behavior. and behavior is the stuff of nidcap” figure 1: drawing of adult brain showing location of m1, or primary motor cortex (cross-hatched area). 2024 • developmental observer • 21 f r o m t h e s c i e n c e d e s k systems that contributes learned patterns of movement control. at each vertebral station along the spinal cord there are neural circuits arranged so that they fire in patterns that create organized muscle movements. some of these movements appear as simple “reflexes”, others as more complex sequences that may move a hand to grasp or a foot to withdraw. the cst and its inputs orchestrate and coordinate the spinal components to create adaptively organized voluntary behaviors.3 importantly, m1’s control of the muscles of face, mouth, tongue and eyes is organized similarly in and on the way out of the cortex, but has a separate name corticobulbar tract (cbt). the cbt emanates from cortex via the same type of layer v neurons described earlier. the two populations (cst and cbt) are bundled together subcortically in the brain where they give and receive connections as they traverse to mid brain. the cbt group departs in the hindbrain. there it connects with nuclei of the cranial nerves. this is an ancient array of sensory and motor nerves that serve the anterior end of essentially every organism that has a front end and is bilaterally symmetrical! in humans and other organisms that have a face, the same organized array of cranial nerves are at work. the cbt axons go no further, but they are in charge from the neck up. following this ultra-brief characterization of the adult motor system, we can turn to some stunning new findings about the development of m1. this new knowledge requires some radical re-thinking, but i believe it has a lot to say about babies in the nicu and about developmental care, so it’s worth digesting. note that the results covered in this discussion apply similarly to humans and a variety of non-human animals. let’s start with one of the major findings: early in postnatal life, m1 does not control movements! is this because m1 is too immature to function and is thus “silent”? no, m1 neurons fire in orderly, lawful, functional ways. but its neuronal activities do not produce movement. instead, m1 neurons in the infant organism fire in response to movements. this was discovered in the lab of mark blumberg (university of iowa), a prominent infant sleep neuroscientist. blumberg and his associates have been carefully observing sleeping infant rats, specifically the “twitches” made regularly by their paws and limbs during “active” sleep, often called rem sleep.4,5 they have mapped the impulses going from the limbs to the brain and from the brain to the limbs. blumberg and his associates discovered that the infants’ spontaneous (unprovoked) twitches aren’t preceded by brain activity; instead, m1 responds to the movements.6 that is, m1 senses the movements – from receptors in the limbs, the skin, or both. simply put, during early infancy m1 is sensory cortex, not motor cortex! in identifying m1 as a functional sensory cortex before becoming primary motor cortex, professor blumberg sees m1’s sensory function as the brain’s way of acquiring a map of its body, perhaps learning the ‘feel’ of the movements of each joint, minor appendage, and limb – and guiding the wiring and sculpting of an accurate cortical map of the body it will come to control. the idea that sensory experience regulates, and shapes neural architecture is supported by examples in other sensory systems.e.g,7,8 the transformation from sensory-to-motor function in a major cortical area is a stunning finding, challenging long-held ideas about developmental continuities and some traditional uses of behavioral measures for inferring cognitive processes.9 we also have to ask, if m1 in the infant is sensory and not motor cortex, what controls the young infants’ movements? the answer attests to the capabilities of the basal ganglia, associated subcortical, hindbrain structures, as well as cerebellar and spinal circuits that comprise the motor system. lack of motor inputs from cortex probably explains the absence of fine motor control that typifies early infant movements. these new findings have many implications pertinent to developmental care in general and to nidcap practice in particular. if the motor behaviors of young infants are controlled subcortically, does this mean that their movements are expressed without conscious awareness and thus lack agency or intent? does this make them meaningless, automatic, reflexes? to such questions and concerns, i believe the data say “no!” all evidence indicates that regardless of “how’ an infant’s movements make and maintain contact with the mother, they are in contact with her body, at which point they can derive all the marvelous benefits of contact behavior. in the animal world, think of infant monkeys, reflexively grasping and holding the fur of their mothers as they amble or climb. these “mere reflexes” serve their purpose. babies stay warm, protected, and repeatedly engaged in prolonged contact interactions with the mother. they are exploring her body and their own in relation to her "the goals of developmental care are served by our understanding of the movements that constitute behavior" 22 • 2024 • developmental observer f r o m t h e s c i e n c e d e s k and to their own movements. every moment teaches a lesson of comfort and safety. every moment is a learning moment. blumberg’s results, for example, demonstrate that sensory stimulation that is experienced as a “by-product” of spontaneous, uncontrolled “twitching” stimulate activity in specific areas of m1. the neuroscience literature provides numerous examples of how “activity-dependent” development shapes the synaptic connections and the very architecture of the highest cortical regions of the brain. on every level, such movements within a developing nervous system are vital to its growth, differentiation, and adaptive functioning. we can better understand the value of positioning and swaddling when it provides a supportive surround, so the baby is “held” within its environment and thus receives continuous cutaneous stimulation. providing opportunities for the baby to move her hands to her face – to self-regulate, to calm herself should also facilitate tactile stimulation to both face and hands that should contribute to establishing or reinforcing the neural maps in the developing brain. it's truly amazing to know that when we observe a newborn’s behavior, we are actually witnessing a process of transformative development, in which the brain’s “motor cortex” is working as a purely sensory field. m1 is operating by completely different, yet vitally important rules. it is receiving and integrating the kinds of impulses that it will soon (by about three months of postnatal age) produce, when it essentially reverses its function and transforms from sensory function to motor function! we are, i believe, entering a new era of comprehension of neurobehavioral developmental care. systems such as nidcap have rested on a foundation of basic description of neural immaturity and susceptibility to change. we now have some important fundamentals, including previously unimaginable findings, that give us deeper insight into developmental processes. next steps include more precise understanding of how to manage these processes as part of caregiving and supporting families to carry forward their baby’s healthy growth and development. the interested reader is encouraged to read the paper by blumberg and adolph9 portions of which inspired the writing of this column. references 1. als h. toward a synactive theory of development: promise for the assessment and support of infant individuality. infant mental health journal, 1982. 3(4): 229-243. 2. als h. a synactive model of neonatal behavioral organization: framework for the assessment of neurobehavioral development in the premature infant and for the support of infants and parents in the neonatal intensive care environment. physical & occupational therapy in pediatrics. 1986.6(3-4): 3-53. 3. grillner s. el manira a. current principles of motor control with special reference to vertebrate locomotion. physiological reviews, 2020.100: 271-320. doi:10.1152/phyrev.00015.2019 4. blumberg ms, marques hg, iida f. twitching in sensorimotor development from sleeping rats to robots. current biology 2013. 23, r532 -r537. doi:10.1016/j.smrv.2015.12.002 5. tiriac a, del rio-bermudez c, blumberg ms.self-generated movements with “unexpected” sensory consequences. current biology, 2014. 24:2136-2141. doi.org/10.1016/j. cub.2014.07.053 6. blumberg ms, dooley jc, sokoloff g. the developing brain revealed during sleep. current opinion in physiology, 2020.15:14-22. doi.org/10.1016/j.cub.2014.07.053. 7. jamann n, jordan m, engelhardt m. activity-dependent axonal plasticity in sensory systems. neuroscience. 2018.368: 268-282. doi: 10.1016/j.neuroscience.2017.07.035. 8. katz lc, shatz cj. synaptic connectivity and the construction of cortical circuits. science, 1996.274(5290): 1133-1138. doi: 10.1126/science.274.5290.1133. 9. blumberg ms, adolph ke. protracted development of motor cortex constrains rich interpretations of infant cognition. trends in cognitive science, 2023. 27(3): 233-245. doi. org/10.1016/j.tics.2022.12.014. diane ballweg, msn, developmental specialist at wakemed hospital in raleigh, north carolina, usarhyme & reflect skin-to-skin contact is great – it’s a fact. instead of you there and here me, when together, we are we. family, father, mother, you are like no other. nothing compares with our kangaroo cares. your scent, words, and warm loving touch help me oh so very, very much. when you have worries, fears or feel blue, i hope my snuggles help you heal, too. tell the staff, the town, the whole world! i grow best with your arms curled around me all day long. i feel calm and preemie strong! affection connection 2 • 2024 • developmental observer in this edition, we explore the multifaceted challenges confronting healthcare professionals as they care for hospitalized newborns and their families. the global crisis of infant mortality persists, particularly pronounced in developing nations where the shortage of nurses exacerbates the situation. considering these pressing concerns, it becomes imperative to explore avenues for support and collaboration. livia nagy bonnard's narrative underscores the influential role parents can play as advocates, as she shares her work to enhance newborn care in hungary. additionally, sophia gerassis sheds light on the enduring impact of siblings' experiences in the neonatal intensive care unit (nicu), offering valuable insights into familial dynamics during such challenging times. the commendable growth of the nidcap federation international (nfi) is an inspiration, with fatima clemente exemplifying exceptional leadership in advancing nidcap and developmental foundation programs. indeed, strong leadership is the cornerstone of nfi's important work, as evidenced by the collaborative efforts of two nidcap training centers in denmark, extending their global reach. bindu george's account offers a glimpse into the commendable initiatives underway in qatar, showcasing developmental care strategies and the requisite training to support them effectively. the dissemination of such initiatives underscores the expanding influence of nfi, as it endeavours to elevate the standard of care for hospitalized newborns worldwide, while simultaneously bolstering its professional membership. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia editorial focused topics. these were consistent with the conference themes and reinforced the focus of the nidcap federation international (nfi). key themes what struck us at this conference was the disparity between the developed world and the developing world. we were presented cover image by stina klemming, sweden doi 10.14434/do.v17i1.37037 spreading the word (continued on p.3) nidcap professionals and trainers at the coinn conference 22 • 2023 • developmental observer kia ora! (hello) from new zealand look closely and you will find our small island country at the bottom of any world map, just below australia in the southwestern pacific ocean. in size, new zealand has slightly less area than the state of colorado in the united states and a little more area than the united kingdom. about two-thirds of the land is economically useful, while the remainder is mountainous. because of its numerous harbours and fjords, the country has an extremely long coastline relative to its area. new zealand is populated by just over five million people. our indigenous people, māori, make up 17% of the national population. their culture is a big part of new zealand’s identity, so respecting, preserving, and promoting māori culture is a vital cornerstone of our country’s healthcare values. we consistently provide, as a team, quality holistic care with respect for family/whānau, encompassing the concepts of te whare tapa whā (the four cornerstones of health), te taha wairua (spiritual), te taha tinana (physical), te taha whānau (family), te taha hinengaro (emotional and psychological) in accordance with te tiriti o waitangi (the treaty of waitangi). in tune with the goals of developmental care, promoting and fostering healthy interpersonal relationships between nga mātua/parents, family/whanau, and baby/pēpi is central to neonatal care delivery in new zealand. the new zealand healthcare system is best classified as a variation on the beveridge model (tax financed healthcare provided by the government) and tends to exhibit outcomes comparable with other developed democracies. this year healthcare delivery in new zealand is undergoing major reform. the local district health boards are being replaced by one national organisation called te whatu ora health nz. a new māori health authority has the power to commission health services and monitors the state of māori health. a range of neonatal care is delivered in a total of 23 different localities across new zealand. six centres are dedicated neonatal intensive care units (nicu) where tertiary care for preterm babies born from 23 weeks gestation onward is provided. these nicus are in the major cities of auckland, hamilton, wellington, christchurch, and dunedin, from north to south. auckland is new zealand’s largest and most populated city with over 1.7 million people and is considered the most cosmopolitan city in the country with ethnic groups from all around the world, including a high proportion of people from pacific islands and asian countries. consequently, with the number of ethnic groups and an excellent climate to grow food, there exists the most amazing cuisine and cultural diversity. nidcap in new zealand the concept of developmental care was first introduced in new zealand by dr. heidelise als. doctors and nurses were impressed by the positive outcomes reported in early studies by als, in particular the development of the synactive theory in the mid-1980s and from this theory the implementation of the newborn individualised developmental care and assessment program (nidcap).1,2,3 dr. als was invited to visit an auckland nicu in the mid 1990’s where she presented her findings. today, 20 years later, a wide range of developmental care interventions are now embedded as part of everyday care skin-to-skin care im ag e us ed w ith p er m is si on global perspective on developmental care new zealand: a nursing reflection dale garton, rn, mn1 lauren kendrick, rn, mn, gradcert nic2 1 nurse unit manager, neonatal intensive care unit, starship child health, auckland, new zealand 2nurse educator and neonatal paper coordinator, neonatal intensive care unit, starship child health, auckland university of technology, new zealand doi: 10.14434/do.v16i1.35780 2023 • developmental observer • 23 in every neonatal unit in new zealand. much of the success of developmental care integration has been due to the passion and persistence of neonatal nurses leading the way in advocating for whanau and pēpi in their care. neonatal teams, in particular nurses, began to question their contribution to the outcomes of pēpi and whānau in their care. how did the care delivered complement the medical and technical advances in neonatal care? nurses, partnering with parents, were uniquely placed to establish cultural change within units. this partnership was integral to family-centred care becoming the success it is today. developmental care had a natural affinity with the nursing concept of caring making it a philosophy that should have been easily embraced by the nursing team.4 in the early days, however, practicing developmental care seemed outside the nicu medical model and was considered by some as an ‘add-on’ to care once the technical and medical tasks had been addressed.5 as developmental care initiatives began to be introduced, these initiatives received little acknowledgment from the wider team as contributing to pēpi or whanau outcomes. the science was relatively new about how the growing brain could be so influenced by the way neonatal care was delivered. additionally, the inability of nurses to articulate their contribution to longterm outcomes suggested a similar conclusion.6 nicu environments were changing, with lower lights and less noise being advocated for by staff. care was also being modified, changing from regimented two and four-hour nursing care handling times to ‘cue based’ or ‘cluster cares’, depending largely on the cultural norms of the unit. it was clear further education and knowledge were required to support the implementation of developmental care strategies and to have stakeholder investment. as new zealand was so far away from many of the research sites, experts, and nidcap training sites this proved to be a challenge. fortunately, the neonatal nurses college aotearoa (nnca), the professional body within the new zealand nurses organisation (nzno) which represents neonatal nurses, stepped up to become strong ambassadors of supporting developmental care practices by providing nursing education opportunities. it is well recognised that understanding the ‘why’ behind developmental care practices is key to influencing and infiltrating evidence-based best practices in neonatal care delivery. through funding, nnca was able to support dr. joy browne, nidcap master trainer, on several occasions to come to new zealand to provide developmental care workshops. dr. browne returned to new zealand recently as a keynote speaker along with dr. heidelise als at the nnca-hosted coinn conference in auckland in 2019. many nurses unable to attend the international conference were able to instead attend full-day programs provided by dr. browne in christchurch, hamilton, auckland, and whangarei. in 2014, inga warren, senior nidcap trainer and co-director of fine international presented the family and infant neurodevelopmental education (fine) level 1 at the auckland starship nicu. a group of five nurses and allied health team members went on to complete the fine level 2 course during the same visit. this program provided ‘steppingstones’ towards implementing nidcap and has been instrumental in providing a road map for fully integrating developmental care practices. new zealand is now working closely with australia, accessing fine training through the australasian nidcap family support planning care swaddled bathing im ag es u se d w ith p er m is si on 24 • 2023 • developmental observer training centre, grace centre for newborn intensive care, the children’s hospital at westmead in sydney. from this centre, nidcap trainer nadine griffiths and nidcap professional associate professor kaye spence have been integral in facilitating and conducting fine training for the neonatal teams in new zealand. with some fortuitous funding and collaboration between three tertiary units, one in the north island (auckland, starship) and two in the south island (christchurch and dunedin), plans were made to host three fine 1 courses. this would be the first time a large cohort of more than 60 neonatal nurses would access fine training which, in turn, would certainly strengthen best practices across the three sites. unfortunately, this wasn’t to be because in march 2020 a global pandemic took hold and diverted all plans as healthcare facilities shifted into emergency planning unlike any ever experienced before. after a delay of two years, in may 2022 three seminars for fine 1 were provided online rather than face-to-face. over 40 neonatal team members from four sites in metro auckland and northland attended two workshops while dunedin hosted another program for local team members. online training meant that geographical distance was no longer a barrier to excellent education, and opportunities increased. impact of developmental care education and training across new zealand the nicu in dunedin introduced family integrated care (ficare) as their care model in november 2018 following involvement as an intervention unit of an international study comparing ficare with standard nicu care. christchurch was to follow, and in 2021 auckland starship nicu adopted this program as well. while it must be recognised that ficare is not a developmental care model, it does support the systems in a hospital setting that, in turn, support developmental care strategies ensuring the parent role is integral in the care of their baby. in the wellington nicu, developmental care is supported by an excellent suite of pamphlets that share information with parents about how they can respond to their babies’ needs at different gestational ages. the waikato nicu has a developmental care team comprised of senior rns and members of the multidisciplinary team who report significant changes in the past five years. their initiatives include a “positioning series” poster for developmentally supportive positioning for staff education. positioning aids are available, although they report many nurses still prefer to make their own ‘deep nest’ using rolled towels and linen. the waikato nursing team has found even the simplest ideas work, such as using phototherapy devices which facilitate containment and allow kangaroo care, cuddles, and breastfeeding without interrupting the delivery of the phototherapy. they have introduced quiet time, every day at 1400 hours when lights are dimmed, and parents are encouraged to provide skin-to-skin holding. further north at both tertiary nicus in auckland, nursing and allied health teams introduced developmental care rounds. teams involved report this activity as being an excellent way to engage and encourage nurses by sharing knowledge and mentoring good practice. parents also benefit, as with the team’s guidance they learn how to read the behaviour of their baby and articulate their observations back to the healthcare team on ward rounds. the auckland starship nicu introduced the infant and family-centered developmental care (ifcdc) standards (https://nicudesign.nd.edu/nicu-care-standards/). while this is a work in progress, it is envisaged that each standard will be accompanied by a multimedia education segment and video to help translate the standards from theory to practice at this site. the team has also enjoyed the opportunity, and experienced collegiality and networking by attending the annual gravens conference on the environment of care for high-risk newborns held each year in florida. this is quite a journey from new zealand, but certainly worth the effort as it maintains the enthusiasm of the passionate staff who continue to pursue what is best for babies in the nicu environment. in summary, over the past 20 years developmental care strategies have been successfully introduced to all neonatal centres in new zealand, although practice variation remains at different hospital sites. with ongoing support from organisations (e.g., nnca), interest from consumer groups (e.g., the little miracles trust nicu parent peer-to-peer support group), and training from fine 1 and 2 and potentially nidcap easily accessible through the australasian nidcap training centre, the road map to ensure developmental care is fully integrated into neonatal care nationally is well on its way to achieving the best outcomes for pēpi and whanau entrusted in our care. references 1. als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of neurobehavioral development of premature infants and their parents in the environment of the nicu. physical & occupational therapy in pediatrics. 1986, 6(3-4):3-53. doi:10.1002/1097-0355(198224)3:4<229::aidimhj2280030405>3.0.co;2-h. 2. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology. 1997, 21(3):178-189. doi.org/10.1016/s0146-0005(97)80062-6 3. als h, lawhorn g, duffy, fh, mcnulty g, gibes-grossman r, blickman jg. individualized developmental care for the very low birth weight preterm infant: medical and neurofunctional effects. the journal of the american medical association. 1994, 272(11):853-858. pmid: 8078162. 4. aita m, snider l. the art of developmental care in the nicu: a concept analysis. journal of advanced nursing. 2002, 41(3):223-232.  doi.org/10.1046/j.1365-2648.2003.02526.x. 5. byers jf. components of developmental care and the evidence for their use in the nicu. the american journal of maternal child nursing. 2003, 28(3):174-180. doi: 10.1097/00005721-200305000-00007. 6. turrill s. a focus of care for neonatal nursing: the relationship between neonatal nursing practice and outcomes. part 2. (research). paediatric nursing. 2003, 15(5). doi:10.7748/ paed.15.4.13.s19. 22 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 aim a newborn intensive care unit (nicu) parent leader collaborates globally with clinical leaders, health system organizations, governments and industry to advocate for credible healthcare quality improvement. nicu parent leaders are deeply aware of the perspectives of patients and families from their own experiences to improve healthcare quality, safety and patient experience. by modeling empathetic listening, discernment & interpretation of patient and parent stories and strengths-based communication, nicu parent leaders build consensus through multistakeholder representation. methods theory & praxis research nicu parent leaders collaborate with organizations, communities and global societies in the following ways: 1. research partnerships: ensure research aligns with the needs of those most impacted, integrates patient and partner perspectives in decisions, and includes diverse community partners to reflect marginalized viewpoints. 2. quality improvement: enhances patient-centered care by systematically improving effectiveness, efficiency, safety, equity, and timeliness of healthcare services through data-driven evaluation and refinement of practices. 3. organizational development: supports leadership development, process improvement, change management, employee engagement, and strategic planning to foster efficiency, adaptability, and sustained growth. 4. readiness assessments: evaluates organizational preparedness for implementing changes, assessing infrastructure, staff skills, organizational culture, regulatory compliance, and impacts on patients and the community. 5. community building: uses administrative and community organizing skills to enhance healthcare organizations' ability to engage patients and families by emphasizing trust, inclusivity, and meaningful contribution from diverse and underrepresented voices. 6. health equity: promotes health equity by ensuring fair access to resources, eliminating disparities based on socioeconomic status, race, or ethnicity, and addressing social determinants of health to achieve optimal well-being for all. 7. event planning, conferences & summits: hosts a spectrum of engagement events, including councils, panels, collaboratives, and workshops. these platforms facilitate collaboration among patients, family caregivers, and healthcare professionals, encouraging diverse perspectives to drive healthcare improvement. 8. board of director leadership: oversees governance, finances, executive leadership, risk management, and stakeholder relations to ensure effective and ethical operation of the organization. 9. educates health communities: delivers health education, assess community needs, provide resource referrals, advocate for health equity, and evaluate program effectiveness to enhance community health outcomes. theoretical process development (results/findings in process) dr. heidelise als was a pioneering figure in the establishment of nidcap, introducing groundbreaking insights that revolutionized our understanding of infant development. central to her contributions was the synactive theory of infant development, emphasizing the crucial role of a robust theoretical framework in clinical effectiveness. dr. als unraveled the sensory, cognitive, and social capacities of infants, highlighting their continuous interaction with the environment. in a parallel manner, nicu parents navigate an unfamiliar environment with heightened vigilance, tasked with acquiring new skills. dr. als designed the model of the nidcap nursery to foster an environment of highly attuned care, supported by a community that envelops families, parents, and infants within the hospital setting. conclusion this abstract proposes leveraging the model of the nidcap nursery in collaboration with nicu parent leaders to enhance healthcare quality, safety, and patient experience. as nicu parent leaders undergo personal and professional growth, including interdisciplinary collaboration and leadership skills development, they bring valuable insights and dedication to the organizational development of nicus. relevance to nidcap effective nicu parent leaders have the transformative potential to apply the principles of the model of the nidcap nursery across multiple facets of the healthcare ecosystem. through empathetic listening, discernment, and strengthspartnering with the nicu parent leader reginato cascamo, k courageous steps; gonzaga university, usa doi:10.14434/do.v18i1.40897 2025 • developmental observer • 23 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 based communication rooted in patient and parent narratives, they collaborate to enhance the well-being of infants, families, healthcare professionals, and hospital communities alike. by nurturing a reciprocal care approach, nicu parent leaders contribute to the restoration and improvement of healthcare systems that once supported them during their own critical journeys. background kangaroo mother care (kmc) is an integral part of neonatal care, with its benefits to babies and families well documented. the position in which the parent holds her baby in kc, is mostly determined by maternal preference in the newborn intensive care unit (nicu). this study aimed to assess whether there is any differences to the babies cerebral oxygen levels, based on the two usual maternal positioning practiced in nicu at cork university maternity hospital (cumh) (30° or 60° incline position) and if either maternal position is more optimal for performing kmc. methods single centre cross-over randomised controlled trial in a tertiary newborn intensive care unit. infants with a minimum corrected gestational age of 28 weeks and minimum 600 grams were included. participants were randomly assigned to commence kmc, with their mother laying at either a 30° or 60° angle. the primary outcome measure was the median cerebral near-infrared spectroscopy (nirs) values between the two positional angles. near-infrared spectroscopy (nirs) oxygen saturation monitoring was chosen as it provides non-invasive, real time, continuous, tissue specific measurements of cerebral oxygen saturation. nirs monitoring can detect cerebral hypoxia, even when other monitors do not show signs of clinical deterioration.1 secondary outcomes were median infant peripheral saturations, median infant heart rates and numbers of significant bradycardia or desaturation episodes during kmc intervention. the results were analysed using the non-parametric wilcoxon signed rank test. results twenty participants were included in the final analysis: median gestational age (ga) at birth was 28+1 weeks (range: 23+2 to 32+6 weeks) and median birth weight was 0.985kg (range: 0.620kg to 2kg). there were no statistically significant differences (p = 0.810) between the median nirs values at 30° (median rso2 = 67.5, iqr = 58.3 – 73.8) and 60° (median rso2 = 68, iqr = 60.5 – 76). there were no statistically significant difference in the median peripheral saturations (p = 1), or median heart rates (p = 0.662) between infants held skin-toskin at 30° or 60° positions. conclusion results indicate that maternal positioning at a 30° or 60° incline did not have a significant impact on cerebral oxygenation values in very preterm infants furthermore either position was associated with the infant’s clinical stability. evidence robustly supports implementation of kmc to improve outcomes for the infant and families. relevance for nidcap as nidcap professionals, when supporting the families in our care with kmc we have to ensure our recommendations are researched based and supporting the best possible outcomes for the infant. reference: 1. vesoulis za, sharp dp, lalos n, swofford dp, chock vy. cerebral near-infrared spectroscopy use in neonates: current perspectives. research and reports in neonatology. 2024;14:8595. https://doi.org/10.2147/rrn.s408536 investigating the effect of held position during kangaroo care on physiological parameters of premature infants: a randomised controlled trial vaughan s1, murphy s1, stapleton i1,2, walsh bh1,2, natchimuthu k1, dempsey e 1,2 1department of neonatology, cork university maternity hospital, cork, ireland 2irish centre for maternal and child health research (infant) centre, cork university maternity hospital, cork, ireland doi:10.14434/do.v18i1.40898 8 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aims maintaining a sensory environment appropriate for prematurely born infants is essential to nidcap practice. reflecting such priorities, the american academy of pediatrics recommends baseline noise levels in a nicu at <45 decibels (db) with allowable transient events <65 db. we assessed levels of acoustic noise within the incubators of an open-bay, level 4 nicu resulting from identified sources of equipment and procedures. in parallel to these measures, we sought via a survey of nicu staff, to measure their understanding of the nicu acoustic emissions. methods we assembled a sensory group consisting of 15 nurses from both the day and night shifts, who were trained to use the niosh sound level meter application (app) for ios devices, which is free from the national institute for occupational safety and health. we then enrolled a diverse group of preterm babies (24 – 36 weeks ga) as hush subjects. the hush cohort was updated every week to record their status and screen for any changes in patient condition and hemodynamical instability. sensory group members recorded the acoustic measurements with the niosh app during times designated for protected sleep or “quiet time”. recordings were made for one hour each time. the monitoring device was placed in the incubator, approximately 25-30 cm from its ears as a means of characterizing the acoustic environment experienced by the baby that is transduced into the incubator. a survey was circulated among the nicu staff, mostly nurses, and 87 (> 73% of those invited to participate) completed the multiple-choice survey. they estimated noise levels associated with a variety of nicu events and procedures. their responses were compared to the measured values collected by the sensory group. results the average noise level within the incubators exceeded the recommended baseline maximum of 45 db. of the various sources of nicu noise exceeding recommended levels, alarms from the cardiac monitors were the loudest. in addition, common procedural events such as closing a port hole door produced transient sounds in excess of 100 db, also exceeding recommendations. many respondents (one-third or more) to the survey correctly estimated several sound levels in decibel units. when the estimates made by the respondents deviated from the actual values, they often underestimated the noise levels experienced by the babies. yet, only about 21% of the 87 respondents had an accurate idea of the acceptable maximum decibel level for nicu noise (40-45 db). the respondents offered a variety of appropriate suggestions for limiting nicu noise. relevance to nidcap our findings identify sources of acoustic noise in an open bay nicu that regularly penetrate incubators and expose infants to db levels deemed excessive by current medical standards and which are typically identified as reducible through nidcap practice. conclusions there are numerous identifiable sources of baseline, ambient noise in the nicu, and several sources of transient sounds that vastly exceed acceptable levels. many of these sounds can be reduced or eliminated by resetting equipment and making minor adjustments to procedures. only a minority of nicu nurses in our sample were aware of the quantitative threshold of acceptable nicu noise, but they can be readily equipped to measure and understand it. the results of this preliminary study help clarify staff awareness of noise levels and sensitize us to other non-acoustic factors that affect babies. these exercises demonstrate the importance of research for improving practice. help us support healing (hush): a preliminary assessment of staff’s estimates of acoustic noise in their level 4 nicu doi 10.14434/do.v17i1.37041dela cruz a, cauan r sidra medicine and research center, doha, qatar understand. the subtle features of states 2aa and 1aa may need to be clarified for nidcap trainers. references: 1. brazelton tb and cramer (1990) states of consciousness. pages 63-68 in the earliest relationship, da capo press. https://doi.org/10.4324/9780429481512 2. als h. (2006) manual for the naturalistic observation of newborn behavior. newborn individualized developmental care assessment program (nidcap). nidcap federation international, 2015. https://nidcap.org/wp-content/ uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behaviornewdesign-feb15.pdf 3. als h (1999) reading the premature infant. in: goldson e, editor. developmental interventions in the neonatal intensive care nursery. new york: oxford university press; p. 18-85. 4. prechtl hfr (1974) the behavioural states of the newborn infant. brain res 76:185 doi: 10.1016/0006-8993(74)90454-5 5. als h, lester bm, tronick ez, brazelton tb. (1982) manual for the assessment of preterm infant's behavior (apib). in theory in research in behavioral pediatrics, fitzgerald h, lester b and yogman m (eds). vol 1, new york: plenum press. pages 65-132. https://nidcap.org/wp-content/uploads/2014/12/apib-manual-withhaedits-1feb2011-currently-used.pdf https://doi.org/10.4324/9780429481512 https://nidcap.org/wp-content/uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behavior-newdesign-feb15.pdf https://nidcap.org/wp-content/uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behavior-newdesign-feb15.pdf https://nidcap.org/wp-content/uploads/2015/02/b.-manual-naturalistic-observation-of-newborn-behavior-newdesign-feb15.pdf doi: 10.1016/0006-8993(74)90454-5 https://nidcap.org/wp-content/uploads/2014/12/apib-manual-with-haedits-1feb2011-currently-used.pdf https://nidcap.org/wp-content/uploads/2014/12/apib-manual-with-haedits-1feb2011-currently-used.pdf developmental observer 20 24 | v o l 1 7 | n o . 1 the official publication of the nidcap® federation international resilience is not an innate capacity. rather it is a dynamic process that requires support and nurturance. —deborah buehler 10.14434/do.v17i1.37084 inside the inaugural heidelise als ............. 1 lecture editorial .............................................................. 2 moment by moment ............................ 6 abstracts from the 2023 .................. 7 nidcap trainers meeting 34th annual nidcap trainers ....... 19 meeting summary and reflection behind the scenes ............................... 22 family voices ........................................... 23 global perspective: china ........... 26 nidcap on the web ............................ 28 nidcap training centers ............... 30 h eidelise als, phd asked can we integrate technological advance into our affective launched-ness as humans.1 this idea of our humanness, our affective launch, and nidcap’s opportunities to support healthy progressions is a critical one. and further, these developments seem interrelated to the notion of resilience. what is resilience? the merriam webster dictionary definition reads: re· sil· ien· cy; an ability to recover from or adjust easily to adversity or change.2 resilience is considered a brain capacity. neuropsychologist david eagleman wrote: the human brain is a dynamic, information-seeking system… it alters its own circuitry to match the demands of the environment and the capabilities of the body.3 what are these environmental demands and body capabilities? within our work, our nidcap framework recognizes the mismatch between the displaced fetus and young infant and their hospital environment. as heidelise often said, we are never not in an environment. she described human infants as having been promised three environments: (1) the mother’s womb; (2) the mother’s breast and body; and (3) the species social group. since the intensive care environment is not one of these evolutionarily promised environments, what are the implications for development and unfolding relationships, for well-being, and, interrelatedly, resilience by being in this environment at such a time in their growth? resilience is the capacity to withstand difficulties. to say that intensive care settings present “difficulties” is a tremendous understatement. difficulties may be experienced as stress. stress may result from novel, unexpected, unprepared, or untoward experiences. for newborns and young the inaugural heidelise als lecture the synactive theory, nidcap, and resilience doi: 10.14434/do.v17i1.37039 (continued on p.2) deborah buehler, phd https://www.merriam-webster.com/dictionary/resiliency?pronunciation&lang=en_us&dir=r&file=resili02%22ri-%cb%88zil-y%c9%99n(t)-s%c4%93 https://www.merriam-webster.com/dictionary/adversity 2 • 2024 • developmental observer the echoes of the 34th annual nidcap trainers meeting are still resonating, marking yet another milestone in our shared journey of promoting developmental care for hospitalized newborns. in this issue of the developmental observer, we are thrilled to bring you the essence of the meeting, capturing the energy and insights that unfolded during this significant event. one of the highlights was deborah buehler's inaugural heidelise als lecture, a powerful discourse on resilience that injects fresh inspiration into our nidcap endeavors. the echoes of her words continue to reverberate, reminding us of the profound impact our collective efforts can have on the lives of the infants we care for. our global community shone brightly as we heard about the groundbreaking work happening across continents. abstract presentations from australia, belgium, canada, colombia, france, germany, iran, israel, qatar, and spain showcased the diversity and richness of our shared commitment. we are confident that the innovative approaches highlighted in these presentations will serve as motivation for your work. gretchen lawhon, in her insightful summary of the meeting, emphasizes the paramount importance of family in our mission. she articulates how the family unit plays a pivotal role in the nidcap journey, underlining the interconnectedness of our work with the broader fabric of familial bonds. through the lens of family voices, katie reginato cascamo shares a deeply personal account of her nidcap experience, demonstrating the transformative power of listening and the profound impact it had on her premature son. her narrative exemplifies the human dimension of our work and reinforces the enduring value of empathy in healthcare. venturing into the international landscape, we explore developmental care in china and xiaojing hu's dedicated efforts to integrate nidcap principles. the global imprint of nidcap is evident, resonating with our shared commitment to realizing the goals set by the nfi for nidcap care worldwide. as the developmental observer embarks on its 17th volume, we are committed to bringing you innovative stories that captivate and inform. in our new "behind the scenes" feature, we introduce rob catalano, a hidden force behind the scenes since the inception of our publication. his story illuminates the collaborative efforts of the many committed individuals who contribute to each issue. your feedback is the lifeblood of our publication, and we eagerly anticipate hearing from you. let us know which features resonate with you and share your ideas for new content. thank you for your unwavering commitment to the nidcap mission. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia erratum. image on page 10 of vol 16, issue 3 should read – ‘joana’ editorial infants, this may be a mismatch between capabilities and capacities and their environments. the center on the developing child at harvard university describes stress as positive, tolerable, or toxic. they write that stress can have a cumulative toll on an individual’s physical and mental health—for a lifetime. the more adverse experiences in childhood, the greater the likelihood of developmental delays and later health problems.4 we know what this looks like from our observational nidcap training. we observe autonomic, motoric, state, attentional, and regulatory stabilities, stresses, and strivings. heidelise frequently quoted winnicott’s writing: babies are liable to the most severe anxieties… if left for too long (hours or minutes) without familiar and human contact; they have experiences which can only be decribed as: going to pieces; falling forever; dying, dying, dying; and losing all vestige of hope for the renewal of contact.5 resilience is not an innate quality. from the womb, fetuses are developing all sorts of competencies. when newborns are born prematurely, they may be described as “fighters” with strong drives to steady, survive and thrive. yet, after attempts to steady and to thrive, they may have experiences of repeated overwhelming instability and they may give up. this is what is referred to in psychology as learned helplessness. if this situation persists it may result in failure to thrive outcomes. reilience develops and is affected by experience. the model of stress apples to individuals of all ages, including parents of infants in intensive care. illness, sleep deprivation, anxiety, fears, struggles, all strain experiences of resilience and well-being and unfolding parenting confidence and competence. professor kristen lee costa wrote sometimes we just don’t have the skills we need for emotional regulation or stress tolerance. in general, our threshold for coping can vary a lot, cover image by karen anderson doi 10.14434/do.v17i1.37037 a milestone in a shared journey (continued on p.3) 2024 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board according to a lot of variables. even missing a night’s sleep, or not being nourished, or cranking at work with a lot on your plate can press upon us and affect our resilience at a point in time.6 for healthcare professionals, those variables may include staffing shortages, experiences of burn-out, a pandemic and caring for vulnerable and ill infants and their families, including the demandingness of twelve-hour shifts. one can easily see how stressors compound, leading to exhaustion, anxiety and frustration which further lead to lessened feelings of effectiveness, well-being, and resilience. one of the central tenets from our nidcap model is that when stresses are too great for an individual, support from the social environment may have steadying, balancing influences – at all ages. the same council from the center on the developing child at harvard university wrote: the single most common finding is that children who end up doing well have had at least one stable and committed relationship with a supportive parent, caregiver, or other adult.7 stable, committed, supportive, nurturing relationships are at the core of nidcap philosophies and practices. this is the affective bond that heidelise described. to understand the nurturing influence of nidcap on functioning, we can look to the writings and research of our very own nfi scientists: the field of neuroscience provides overwhelming evidence that the brain organizes itself based on its early experiences. heidelise, frank duffy, md, and gloria mcanulty, phd wrote: nidcap significantly improved neurodevelopment in terms of behavior, functional brain connectivity and brain structure and health.8 the study of epigenetics provides mounting evidence that infant environments can change the chemistry of their genes—both negatively and positively. heidelise wrote: nidcap may work at the level of preventing such untoward epigenetic effects by supporting the infant’s optimal genomic rather than distorted epigenomic blueprints.9 from the field of microbiology, jeffrey alberts, phd introduced the idea of a shared mother-offspring microbiome (or mom) with extensive involvement of autonomic, motor, state, attention, and self-regulation functions. alberts was struck by the compatibility of gut-brain ideas with the distinctly integrative and bi-directional qualities of nidcap perspectives.10 (continued on p.4) 4 • 2024 • developmental observer within neurophysiology, oxytocin has been shown to play a role in human behaviors and social interactions. dorothy vittner wrote: oxytocin may serve as a potential moderator for improving responsiveness and synchrony in parent-infant interactions.11 the field of functional medicine studies the influences and interactions of nutrition, molecular biology, and epigenetics on health and disease with individualized approaches to promote well-being. nidcap trainer, deana demare hally describes functional medicine as the focus of the epigenetic interplay between environmental influences and one’s biological systems; which of course very much aligns with synactive theory.12 brain, genes, gut, hormones, and their interactions the evidence is mounting to support the necessity of caring for young infants in environments that closely align with their expectations and capabilities. when nidcap is studied, it is done so as a whole caregiving approach rather than as ingredients to care. this is because the nidcap approach supports dynamic, evolving developmental progressions, relationships, interactions, and systems. the synactive model of development and interrelatedly the synactive model of developmental care have been conceptualized as graphics. to appreciate the complexity of this care, you can overlay these two models on one another for considerations of individuals in the context of the intensive care setting.13 we know from the synactive model of development (figure 1) that individual/environment interactions are continuously occurring with active developmental strivings and that infants are integrally part of their social systems. we also know that development never stops, for any of us. everyone is on their own developmental trajectory and is developing all the time. in our nidcap lectures, we make analogies about how our subsystems are taxed by learning new skills, such as driving a manual car or learning to downhill ski. in intensive care settings, families and healthcare professionals alike are experiencing new and perhaps difficult moments and situations. for the infants, their parents are their primary nurturers and advocates. parents are learning and responding to their own experiences, which include parenting their infant in a hospital setting and all that that means. parents are part of family systems, who are also made up of individuals on their own trajectories. parents, and their family systems, are all in turn cared for by the infant intensive care healthcare professionals and staff. these hospital team members are also interacting with their physical and social environments and developing themselves. healthcare professionals and staff care for infants and families are part of hospital, healthcare systems – which are all made up of individuals. all these individuals and their systems are all part of larger local and global communities. figure 2 is a purposefully dizzying graphic to show that stresses are being experienced at all levels by all individuals… positive, growth-promoting ones, and negative, damaging ones, as well as ones in between. it may be daunting to imagine how to support optimal experiences and outcomes for infants, parents, families, healthcare professionals, and hospital systems, figure 1 2024 • developmental observer • 5 so we look to our nidcap framework to guide us under these circumstances. the key to resilience and well-being in infants, families, healthcare professionals, and even whole systems is through embedding understandings and support for all those individuals with consistently well-integrated, infant-family-staff mutually regulating nidcap care. supported, resilient professionals will support and guide families and parents who in turn will nurture their infant’s emerging next steps and their own resiliencies. this is also multidirectional – balance and strength in an individual (infants through adults) support the balance and strength of others. inspirations from the field of infant mental health support our nidcap care translations to create optimal healthcare environments. joy browne, phd has written extensively and is an important resource on this topic. she wrote: there is no more important place to establish a solid foundation for a baby’s emerging infant mental health than in intensive care.14 she also described the importance of creating a solid foundation for parents and their roles as the parents of their vulnerable young infants. reflection and supportive relationships, integral components of infant mental health approaches, have long been valued and well-integrated into our nidcap approach. linda gilkerson and heidelise wrote: relationships are central to the goals and the implementation of developmentally supportive care. and they quoted shanok to say (t)he inclusion of reflective process as a component of developmentally supportive care helps the nursery become a place where strengths are emphasized while vulnerabilities are partnered.15,16 dr. amit sood stated resilience is the core strength you use to lift the load of life.17 one of the most poignant examples of this message can be found in the story that heidelise used to share in her introductory nidcap lectures about a young infant named ronnie. ronnie was a child who had chronic lung disease. his hospital stay lasted months and months. the triage room in the back of the nicu was converted into his private room with his family. heidelise worked very closely with them. she maintained contact with ronnie through at least 20 years of age. ronnie’s early childhood experience in the hospital, included receiving a tracheotomy and lung disease, yet none of these challenges diminished his delight and joy in his world nor his mother’s confidence in his care and in herself as his mother. that is the beauty of resilience and the power of nidcap care. resilience is not an innate capacity. rather it is a dynamic process that requires support and nurturance. how do infants develop the tools for resilience? how do they go from “giving up” to the beginning of experiences of competence and stability? the guide for developing resilience comes from turning the lights down low, being tucked into flexion, hand swaddling, and holding, it comes from nurturance. the infant’s parents are what is needed for these ongoing opportunities for the infant to experience relaxation and success. and parents need support and nurturance from the healthcare professional team, figure 2 6 • 2024 • developmental observer who in turn, need to be nurtured themselves. nidcap care provides critical scaffolding for the development of resilience. heidelise’s charge to all of us… was can we integrate that technological advance into our affective launch as humans? this is an extraordinarily important challenge to strive to do. because having greater resilience and well-being at all ages helps to navigate difficult challenges of life which in turn may lead to their mastery and ever-joyful lives. references 1. als h. the family in synactive perspective: evolution, biology and psychology. nidcap trainers meeting, october 19, 2015. phoenix arizona usa. 2. merriam-webster dictionary https://www.merriam-webster.com/dictionary/resiliency# 3. eagleman d. (2020). livewired – the inside story of the ever-changing brain. vintage books, new york. p. 7. https://eagleman.com/books/livewired/ 4. center on the developing child harvard university https://developingchild.harvard.edu/ science/key-concepts/toxic-stress 5. winnicott donald w., 'dependence in child care', in lesley caldwell, and helen taylor robinson (eds), the collected works of d. w. winnicott: volume 9, 1969 1971 (new york, 2016; online edn, oxford academic, 1 dec. 2016), https://doi.org/10.1093/med:psych/9780190271411.003.0047 6. costa k. http://mentalfloss.com/article/80152/reliance-isn’t-innate-heres-how-we-can cultivate-it 7. supportive relationships and active skill-building strengthen the foundations of resilience (working paper 13) (2015) national scientific council on the developing child, center on the developing child at harvard university. https://developingchild.harvard.edu/ wp-content/uploads/2015/05/the-science-of-resilience.pdf 8. als h, duffy fh, mcanulty g, butler sc, lightbody l, kosta s, weisenfeld ni, robertson r, parad rb, ringer sa, blickman jg, zurakowski d, warfield sk. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. j perinatol. 2012 oct;32(10):797-803. doi: 10.1038/jp.2011.201. epub 2012 feb 2. pmid: 22301525; pmcid: pmc3461405. 9. als h. lamarck, darwin and the science of nidcap: epigenetics in the nicu. developmental observer, 2011, 4(2). 10. alberts j. (personal communication) – october 13, 2023 11. vittner d, mcgrath j, robinson j, lawhon g, cusson r, eisenfeld l, walsh s, young e, cong x. increase in oxytocin from skin-to-skin contact enhances development of parent-infant relationship. biol res nurs. 2018 jan;20(1):54-62. doi: 10.1177/1099800417735633. epub 2017 oct 11. pmid: 29017336 12. demare hally d. (personal communication) – october 18, 2023 13. als h. (1982). toward a synactive theory of development: promise for the assessment of infant individuality. infant mental health. 3(4), 229-243.; als h (1992). individualized, family-focused developmental care for the very low-birthweight preterm infant in the nicu. advances in applied developmental psychology (vol 6, pp. 341-388). 14. browne j. from infant mental health focus (principle 2) standards in development. the basics of infant and early childhood mental health: a briefing paper | zero to three. 15. gilkerson l, als h. role of reflective process in the implementation of developmentally supportive care in the newborn intensive care nursery. infants and young children; 1995; 7(4): 20-28 16. shanok rs the supervisory relationship: integrator, resource, and guide. in fenichel e, ed. learning through supervision and mentorship: a source book. arlington, va: zero to three; 1992. p40. https://www.amazon.com/learning-supervision-mentorship-development-toddlers/dp/0943657199 17. sood a. stronger: the science and art of stress resilience paperback – december 13, 2018 gauri sood (editor) publisher: global center for resiliency and wellbeing. https://www. amazon.com.au/stronger-science-art-stress-resilience/dp/0999552511 compilation of nidcap in the moment, by deborah buehler 2024 • developmental observer • 13 f a m i l y v o i c e s i was two years old when my sister dimi was born on mother’s day, critically ill and premature at 30 weeks gestation with a 500-gram tumour in her chest. i would spend time with my family in the newborn intensive care unit (nicu) although i don’t remember this. i grew up as a sibling to a baby that was in the nicu, and over the years i found it hard watching my sister in pain and the trauma she and my parents faced. it was very challenging in those early years of my sister's life. my parents spent many hours at the hospital, and i stayed with my aunty and grandparents, who gave me a lot of support. while i was growing up, the experience of sharing dimi’s history made me stronger in a way. i needed to be there for her, especially when i could see that she was worried and scared. after dimi was discharged from the nicu she needed to go to the children’s hospital for follow up blood tests and scans till she was six years old. i would usually go with mum and dimi and remember how scared dimi would be. i was extremely protective of my little sister, and we were inseparable. as we got older, the bond we had continued. i am proud of dimi, and we have a good relationship, although she is two years younger, we are still very close. as i grew older my parents became involved in fundraising for the nicu and hospital. i was very grateful to be involved as it taught me to be appreciative and that raising awareness of the work of the nicu is important. other people get to see what my family went through and the important role nicus play. my mum fundraises a lot and she shares dimi’s story to give other families hope. i have been actively involved with fundraising. mum has encouraged us to give back to the hospital. as a family we have organised a successful gala dinner in 2016 and other fundraising events, and we also wrap and deliver gift packs for mother’s day, father’s day, christmas, nidcap day as well as take part as a family in the annual race for grace bike marathon. my parents attend the annual grace gala and my sister, and i have also attended two of them. i think my life has been entwined with the nicu, the doctors, nurses and therapists. bringing our story to life in 2023, i graduated from year 12 high school at all saint’s grammar in sydney. for my subject of visual arts, i had to complete the theory of various influential artists and a practical of a series of major works based on a theme. i created a series of oil paintings to portray the trauma faced by my family because of my sister's complicated birth. my family was informed in the nicu my sister had a 10% survival rate, leaving them in an extremely vulnerable and emotional state. these emotionally charged artworks serve as a testament to my family's challenging and unforgettable experience, with the aim to raise awareness of the severity of this situation. through this body of work, i sought to evoke a poignant blend of vulnerability and hope, capturing the transformative journey of my younger sister. the first canvas shows my sister just after surgery – this was her worst point. it draws out vulnerability and is confronting to capture the audience. my intention is to show people the power of faith. the second canvas shows people that from a bad situation things can get better – it portrays hope and faith. i wanted to raise awareness that without the nicu the situation would have been different. the third canvas shows me and my sister. she is getting better on the road to recovery. it is very special as it shows me and her connecting on the road home. while the genesis of my art is rooted in personal experience, various artists have influenced my creative practice. among them, alyssa monks (https://www.alyssamonks.com/) how being a nicu sibling influenced my life sophia gerassis column editor: debra paul, otr the presence of siblings in the newborn intensive care unit is encouraged and recommended by the standards for newborn care and parent organisations. sibling support programs in the nicu have a vital role in implementation of individualized family and infant developmental care. siblings are an important part of a family’s experiences and sophia’s story illustrates how the experience of having a sibling in the nicu can influence one’s life and impact career choices. doi:10.14434/do.v17i2.38129 sophia's high school graduation photo http://www.alyssamonks.com 14 • 2024 • developmental observer stands as a significant inspiration. her profound artworks capture the essence of vulnerability and intimacy in the human experience, navigating the disquieting spaces of emotional distress. drawing from the same medium, i have endeavoured to emulate alyssa monks' painting style, melding realism with a confrontational subject matter, thereby attempting to forge a powerful connection with the viewer. the paintings not only offer a glimpse into my family's perseverance through our personal journey but also serve as a catalyst for broader discussions about the challenges faced by families in similar situations. the power of storytelling through art i found when my art was on display people don’t say much – maybe they are in a state of shock. however, when they read the story, they seem to understand. the three pieces took me nine months to complete. while i was painting, it brought back feelings and emotions. it also brought back emotions for my mother which i found was very touching. it was hard to balance all my studies during my final year of school. i had to meet a deadline with my bodies of work which needed to be submitted for higher school certificate marking. i also needed to allow time to study for my upcoming exams. it was difficult but i am proud of myself for being able to complete and achieve great results. creating connections through art i would like people to see things from a sibling’s perspective and to be aware of the effect the experience and the trauma can have on a sibling. for me it resulted in a strong connection between me and my family to the nicu (grace), that’s why we fundraise and are passionate about making a difference in the lives of others. i want people to feel a connection to the artwork. they may not have had the same experience, but they can appreciate those who have. my message to other siblings of nicu babies is to have hope and be there for them. in the end, with lots of love, patience and with all the amazing medical help, everything will be okay. you must have strength. i also think it is important for siblings to be present in the nicu, so that the family is whole during that stressful time. i am now about to embark on my career. i started at macquarie university in february 2024 where i have enrolled in a double degree of speech & hearing sciences and psychology. this is a four-year course with an additional two years for a masters in speech therapy, a total of six years. my sister was seeing a speech therapist when she was younger, and i became interested in speech therapy. ultimately, i would love to work with children and help them overcome their speech issues. helping others makes me happy. i was also looking at courses that would not be taken over by artificial intelligence in the next few years, as well as courses in demand. i am hoping eventually to have my own practice. painting is a hobby, and i will keep doing it as i enjoy it and it helps me relax. i have attended art classes since i was six years old and now teach art to other children. i have also sold a few of my creations. my favourite works are my series of major works – called tiny miracles – named after mum’s organisation. it was very personal – links into my sister who was tiny and also our miracle! canvas 1 canvas 2 canvas 3 sophia painting 2024 • developmental observer • 15 words from my sister “seeing the paintings made me feel special and honoured that sophia did her major works on me and my difficult start to life. it made me feel different and the way it affected my family. my sister sophia is very special to me, more than just my sister, she is an inbuilt best friend. i want to keep doing things for the hospital and keep a connection as they saved my life and also save the lives of other babies every day.” words from my mother “it was emotional watching sophia paint. i am very proud and impressed with her work, even more so because of the strength and maturity she showed during the whole process. it has shown me that sophia felt strongly about the subject and her connection to dimi. as a two-year-old, sophia always sat quietly with dimi in the nicu. it was important for her to be there, so we were all a family together.” sophia's family contributing at fundraising event for the nicu nidcap federation international board of directors and staff 2024 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 24 • 2024 • developmental observer s e l e c t e d p u b l i c a t i o n s 2 0 2 4 search – ‘nidcap’ in all languages in google scholar 2024, verified in pub-med. if no pub-med field left blank. 1. abad ms, villa s, aemmi sz, behbood h. how can we improve the experience of mothers whose baby is hospitalized in the nicu? journal of neonatal nursing. 2024 apr doi:10.1016/j.jnn.2023.08.001. 2. asiri a, ahmed fa, almowafy aa, mohamed ra, nouh wg, abdelrahem as, kafl rh, mohamed mf, moursy sm. instructional guidelines and group discussion effects on new nurses' competency regarding nursing care of preterm infants. heliyon. 2024 jun 6;10(11):e32586. doi: 10.1016/j. heliyon.2024.e32586. pmid: 38961993; pmcid: pmc11219499. free article https:// www.cell.com/heliyon/fulltext/s24058440%2824%2908617-1 3. atilano rp, valeriano tb. conocimiento y cuidado de enfermería en el neurodesarrollo del neonato prematuro. sciéndo. 2024 apr 12. doi:10.17268/ sciendo.2024.019 no pub med 4. bater ml, gould jf, collins ct, anderson pj, stark mj. child development education in the neonatal unit: understanding parent developmental literacy needs, priorities and preferences. patient educ couns. 2024 feb;119:108058. doi: 10.1016/j. pec.2023.108058. epub 2023 nov 10. pmid: 37976667. free article https://www. sciencedirect.com/science/article/pii/ s0738399123004391 5. browne jv. fragile infant forums for implementation of ifcdc standards: insights from the 37th annual gravens meeting. neonatology today. 2024 mar 1;19(3). on-line:www.neonatologytoday. 6. buil a, thomas n, chevalier b, devouche e. effects of skin-to-skin contact in supported diagonal flexion positioning on movement quality in very preterm infants at term age. early hum dev. 2024 mar;190:105954. doi: 10.1016/j. earlhumdev.2024.105954. epub 2024 feb 6. pmid: 38340687. 7. butler sc, rofeberg v, smith-parrish m, laronde m, vittner dj, goldberg s, bailey v, weeks mm, mccowan s, severtson k, glowick k, rachwal cm. caring for hearts and minds: a quality improvement approach to individualized developmental care in the cardiac intensive care unit. front pediatr. 2024 apr 9;12:1384615. doi: 10.3389/ fped.2024.1384615. pmid: 38655280; pmcid: pmc11037267. free article https:// www.ncbi.nlm.nih.gov/pmc/articles/ pmc11037267/ 8. carvalho mes, justo jmrm. maternal humming during kangaroo care: effects on preterm dyads' physiological parameters. children (basel). 2024 mar 21;11(3):373. doi: 10.3390/children11030373. pmid: 38539408; pmcid: pmc10969544. free article https://www.ncbi.nlm.nih. gov/pmc/articles/pmc10969544/ 9. castello c. « le nidcap m’a donné l’impression d’avoir une perception plus juste et plus objective de l’enfant » ["the nidcap gave me the impression of having a fairer and more objective perception of the child"]. soins pediatr pueric. 2024 jan-feb;45(336):25-27. french. doi: 10.1016/j.spp.2023.12.006. epub 2024 feb 6. pmid: 38365392. 10. culbreth r, self-brown s, spratling r, spears ca, osborne mc, melnyk bm. adaptation of safe care, an evidence-based parenting program, for caregivers of infants in the neonatal intensive care unit. appl nurs res. 2024 aug;78:151817. doi: 10.1016/j.apnr.2024.151817. epub 2024 jun 27. pmid: 39053997. 11. darilek u, finley e, mcgrath j. a narrative review of nicu implementation of evidence-based early relational health interventions. adv neonatal care. 2024 jun 1;24(3):253-267. doi: 10.1097/ anc.0000000000001151. epub 2024 may 30. pmid: 38815279. 12. de bijl-marcus k, benders mjnl, dudink j, ahaus k, kahlmann m, groenendaal f. morbidity and trends in length of hospitalisation of very and extremely preterm infants born between 2008 and 2021 in the netherlands: a cohort study. bmj open. 2024 jun 4;14(6):e078842. doi: 10.1136/bmjopen-2023-078842. pmid: 38834326; pmcid: pmc11163635. free article https://pubmed.ncbi.nlm.nih. gov/38834326/ 13. detollenaere j, benahmed n, costa e, van den heede k, christiaens w. barriers to the implementation of infantand family-centered developmental care from focus groups with neonatal care providers. j perinat neonatal nurs. 2024 apr-jun 01;38(2):221-226. doi: 10.1097/ jpn.0000000000000730. epub 2024 may 13. pmid: 38758277. 14. duffy n, hickey l, treyvaud k, delany c. 360-degree phenomenology: a qualitative approach to exploring the infant experience of hospitalisation in neonatal intensive care. early hum dev. 2024 mar;190:105963. doi: 10.1016/j. earlhumdev.2024.105963. epub 2024 feb 4. pmid: 38377880. 15. elliot-smith a, sammut a, hutchon b, merchant n, o'brien f, huertasceballos a. early intervention to improve neurodevelopmental outcomes for high-risk infants. paediatrics and child health. 2024 jan 9. doi: 10.1111/dmcn.14187 16. engel v, mauron papadimitriou v, buehrer l, ebner l, keller l, gosteli m, siegfried s, latal b, kiechl-kohlendorfer u, held u. swiss-austrian very preterm infant transition systematic review (save-t): transition to home: improving outcomes of children and families-a systematic review protocol. medrxiv. 2024:2024-04. doi:10.1101/2024.04.23.24306012. 17. erdoğan ç, turan t. evaluation of the effectiveness of digital game-based learning given to nursing students for the developmental care of infants in neonatal intensive care unit. comput inform nurs. 2023 may 1;41(5):300-308. doi: 10.1097/cin.0000000000000920. pmid: 37145853. 18. foster j, pathrose sp, briguglio l, trajkovski s, lowe p, muirhead r, jyoti j, ng l, blay n, spence k, chetty n, broom m. scoping review of systematic reviews of nursing interventions in a neonatal intensive care unit or special care nursery. j clin nurs. 2024 jun;33(6):21232137. doi: 10.1111/jocn.17053. epub 2024 feb 9. pmid: 38339771. maria lopez maestro and kaye spence editorial team doi:10.14434/do.v17i3.39759 2024 • developmental observer • 25 s e l e c t e d p u b l i c a t i o n s 2 0 2 4 19. franco f, chifa m, politimou n. home musical activities boost premature infants' language development. children (basel). 2024 may 1;11(5):542. doi: 10.3390/children11050542. pmid: 38790537; pmcid: pmc11120229. https:// pubmed.ncbi.nlm.nih.gov/38790537/ 20. franco fuenmayor me, fawcett a, schwartz ke, horner s, balasundaram m, burke bl, bean ka, russell ln, simonton e, machut kz, fry jt. understanding family-centered care in the nicu: a scoping review protocol. jbi evid synth. 2024 jul 1;22(7):1379-1386. doi: 10.11124/ jbies-23-00252. pmid: 38385497. 21. fujimoto, t. 藤本智久, 皮居達彦, 田中正道, 石本麻衣子, 大谷悠帆, 船曳幸代, 久呉真章. 「 超低出生体重児に対する nidcap (newborn individualized developmental care & assessment program) の効果~ 修正 1 歳 6 か月および修正 3 歳での発達指数の検討~」 22. griffiths n, laing s, spence k, foureur m, popat h, hickey l, sinclair l. developmental care education in australian surgical neonatal intensive care units: a cross-sectional study of nurses' perceptions. heliyon. 2024 may 7;10(10):e30572. doi: 10.1016/j.heliyon.2024. e30572. pmid: 38799751; pmcid: pmc11126797. https://www.ncbi.nlm.nih. gov/pmc/articles/pmc11126797/ 23. guittard c, eutrope j, caillies s, loron g. effect of tactile and/or kinesthetic stimulation therapy of preterm infants on their parents' anxiety and depressive symptoms: a systematic review. bmc psychol. 2024 jan 2;12(1):3. doi: 10.1186/s40359-023-01510-x. pmid: 38167522; pmcid: pmc10759426. free article https://pubmed.ncbi.nlm.nih. gov/38167522/ 24. heyns b, downing c. validation of a care model in neonatal intensive care units: a mixed method study. journal of neonatal nursing. 2024 jan 19. doi:10.1016/j.jnn.2024.01.00 25. hollund imh, aakvik kad, benum sd, ingvaldsen sh, lydersen s, tikanmäki m, hovi p, räikkönen k, kajantie e, johnson s, marlow n, baumann n, wolke d, indredavik ms, evensen kai. mental health, pain and tiredness in adults born very preterm or with very low birthweight. acta paediatr. 2024 jan;113(1):72-80. doi: 10.1111/apa.16982. epub 2023 oct 3. pmid: 37787099. 26. i̇ncekar mç, çeçen e, kazmacı vk, selalmaz m, ogut nu. individualized developmental care practices of nurses working in neonatal intensive care units: a qualitative study. hacettepe üniversitesi hemşirelik fakültesi dergisi. 11(1):35-45. doi:10.31125/ hunhemsire.1248470 27. ismail a, salaghor sm, alshomrani sa, almodallal h. the impact of using nesting care on heart rate, oxygen saturation, and pain among premature neonates in neonatal intensive care units in saudi arabia: a quasiexperimental study. cureus. 2024 jun 6;16(6):e61775. doi: 10.7759/cureus.61775. pmid: 38975484; pmcid: pmc11227033. free article https://pubmed.ncbi.nlm.nih. gov/38975484/ 28. jaeger cb. baby and family-centered care in the neonatal intensive care unit: changing perspective. crit care nurs clin north am. 2024 jun;36(2):185-192. doi: 10.1016/j.cnc.2024.01.005. epub 2024 feb 7. pmid: 38705687. 29. jimenez-fernández l, serrano-gutierrez a, martínez-pérez p, melchor-muñoz p, fernández-carvajal a, camposmartínez b, piris-borregas s, pontvilalta m, collados-gómez l. lateral kangaroo position for thermal stability of extremely preterm: non-inferiority randomized controlled trial. nurs crit care. 2024 jun 8. doi: 10.1111/nicc.13102. epub ahead of print. pmid: 38850068. 30. johnson lc, mcmanus b, blanchard y, nugent jk. the newborn behavioural observations system: a relationshipbuilding intervention to support families in the neonatal intensive care unit. acta paediatr. 2024 jun 8. doi: 10.1111/apa.17314. epub ahead of print. pmid: 38850088. 31. kaçar n, özcan h. midwives’ knowledge level about newborn individualized development care and assessments program. ebelik ve sağlık bilimleri dergisi.7(1):30-8. doi:10.5281/ zenodo.10926585 32. kocakabak c, van den hoogen a, rothfus m, campbell-yeo m, kostenzer j, axelin a, schofield p, latour jm. identifying outcomes and outcome measures in neonatal family-centered care trials: a systematic review. pediatr res. 2024 jun 7. doi: 10.1038/s41390-02403293-2. epub ahead of print. pmid: 38849484. 33. köse s, ayran g. the effect of social support and optimism on depression in mothers of premature babies hospitalized in neonatal intensive care unit. journal of neonatal nursing. 2024 jun 26. doi:10.1016/j.jnn.2011.11.001 34. kumar a. neonatal physiotherapy among neonates admitted in neonatal intensive care unit (nicu): a scoping review. journal of neonatal nursing. 2024 apr 24. doi:10.1016/j.jnn.2024.04.012 35. landsem ip, handegård bh. parental reports of hospitaland communitybased follow-up services, self-efficacy, and symptoms of depression a few months after discharge of a prematurely born child. bmc public health. 2024 jun 19;24(1):1630. doi: 10.1186/ s12889-024-19079-4. pmid: 38898436; pmcid: pmc11186226. https://pubmed. ncbi.nlm.nih.gov/38898436/ 36. latour jm, rennick je, van den hoogen a. editorial: family-centered care in pediatric and neonatal critical care settings. front pediatr. 2024 mar 28;12:1402948. doi: 10.3389/ fped.2024.1402948. pmid: 38606367; pmcid: pmc11007701. free article https:// pubmed.ncbi.nlm.nih.gov/38606367/ 37. lee j, choi s. the experience of fathers whose infants were hospitalized in neonatal intensive care unit in south korea: a scoping review. j pediatr nurs. 2023 sep-oct;72:36-44. doi: 10.1016/j. pedn.2023.03.015. epub 2023 apr 8. pmid: 37037103. free article https://www. pediatricnursing.org/article/s08825963%2823%2900070-2/fulltext 38. lee j. neonatal family-centered care: evidence and practice models. clin exp pediatr. 2024 apr;67(4):171-177. doi: 10.3345/cep.2023.00367. epub 2023 jun 14. pmid: 37321589; pmcid: pmc10990654. free article https://pubmed.ncbi.nlm. nih.gov/37321589/ 39. research group of developmental care for very low birth weight infants in china; lyu t, ye r, li ll, zhang ll, xiao j, ma yl, li f, rong h, liu d, wang h, wang y, gu ww, xuan y, chen x, fan ql, tang yf, huang xh, qin a, zhang yl, dou y, hu xj. the effect of developmental care on the length of hospital stay and family centered care practice for very low birth weight infants in neonatal intensive care units: a cluster randomized controlled 26 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 trial. int j nurs stud. 2024 aug;156:104784. doi: 10.1016/j.ijnurstu.2024.104784. epub 2024 may 5. pmid: 38788261. free article https://pubmed.ncbi.nlm.nih. gov/38788261/ 40. mann p, schmied v, psaila k, foster j. integrative review of cobedding of infant twins. j obstet gynecol neonatal nurs. 2023 mar;52(2):128-138. doi: 10.1016/j. jogn.2022.12.004. epub 2023 jan 23. pmid: 36702163. 41. markkula a, pyhälä-neuvonen r, stolt s. interventions and their efficacy in supporting language development among preterm children aged 0-3 years a systematic review. early hum dev. 2024 aug;195:106057. doi: 10.1016/j. earlhumdev.2024.106057. epub 2024 jun 9. pmid: 38901388. free article https://doi. org/10.1016/j.earlhumdev.2024.106057 42. marret s, chadie a, muller jb, chollat c. le neurodéveloppement et la neuroprotection du jeune enfant [neurodevelopment and neuroprotection in young children]. gynecol obstet fertil senol. 2024 julaug;52(7-8):481-489. french. doi: 10.1016/j. gofs.2024.03.003. epub 2024 mar 16. pmid: 38492741. 43. mcalinden b, pool n, harnischfeger j, waak m, campbell m. 'baby liberation' developing and implementing an individualised, developmentallysupportive care bundle to critically unwell infants in an australian paediatric intensive care unit. early hum dev. 2024 mar;190:105944. doi: 10.1016/j. earlhumdev.2024.105944. epub 2024 jan 23. pmid: 38290275. 44. mccarty db, clary-williams e, leblond kd, liu t, zbornik-thompson t, ulrich jn, go ms. interdisciplinary collaborative eye examinations to protect preterm infant neurodevelopment: a quality improvement project. front psychol. 2024 may 6;15:1354033. doi: 10.3389/ fpsyg.2024.1354033. pmid: 38770256; pmcid: pmc11102993. free article https://www.frontiersin.org/journals/ psychology/articles/10.3389/ fpsyg.2024.1354033/full 45. mohagheghi p, razavinia f, khosravi a, mousavi ss. effect of a multifaceted approach on perceived support among mothers of preterm infants: a quasiexperimental study. sage open nurs. 2024 mar 24;10:23779608241231193. doi: 10.1177/23779608241231193. pmid: 38529052; pmcid: pmc10962032. free article https://www.ncbi.nlm.nih.gov/ pmc/articles/pmc10962032/ 46. moreno-sanz b, alferink mt, o'brien k, franck ls. family integrated care: state of art and future perspectives. acta paediatr. 2024 may 13. doi: 10.1111/ apa.17272. epub ahead of print. pmid: 38738866. 47. núñez-lópez i, cid-expósito mg, abalo r, serrano-gutiérrez a, jiménez-fernández l, collados-gómez l. content validity of the spanish adaptation of the premature infant pain profile revised. pain manag nurs. 2024 feb;25(1):e50-e57. doi: 10.1016/j.pmn.2023.06.012. epub 2023 jul 28. pmid: 37517874. https://www. painmanagementnursing.org/article/ s1524-9042%2823%2900129-7/fulltext 48. oliveira fa, brandão mt. participação de pais nos cuidados precoces em unidades de cuidados intensivos neonatais: uma revisão sistemática de literatura. research, society and development. 2024 mar 4. doi:10.33448/ rsd-v13i3.45174 no pub med 49. olgun ab, yüksel d, yardımcı f. the effect of a light-dark cycle on premature infants in the neonatal intensive care unit: a randomized controlled study. j pediatr nurs. 2024 jul-aug;77:e343-e349. doi: 10.1016/j.pedn.2024.04.050. epub 2024 may 9. pmid: 38724313. 50. orton j, doyle lw, tripathi t, boyd r, anderson pj, spittle a. early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. cochrane database syst rev. 2024 feb 13;2(2):cd005495. doi: 10.1002/14651858. cd005495.pub5. pmid: 38348930; pmcid: pmc10862558. free article https:// pubmed.ncbi.nlm.nih.gov/38348930/ 51. padilla-muñoz em, barbanchomorant mm, lanzarote-fernández md, sanduvete-chaves s, chacón-moscoso s. psycho-emotional intervention with parents of very preterm babies during the first year: a single-arm pilot study. fam process. 2024 apr 24. doi: 10.1111/ famp.13002. epub ahead of print. pmid: 38659149. 52. pallás-alonso c, montealegre a, hernández-aguilar mt, muñoz-amat b, collados-gómez l, jiménez-fernández l, garcía-lara n, cabrera-lafuente m, moral-pumarega mt, lópezmaestro m, charpak n. xiii international conference on kangaroo mother care different opinions, experiences and related kmc issues: good practices, stabilisation concept, nutrition and basic respiratory support. acta paediatr. 2023 dec;112(12):2478-2485. doi: 10.1111/ apa.16960. epub 2023 sep 5. pmid: 37667990. 53. palomo am, caba jc, camprubí mc, díez eb, gil js, veciana ar. implementing palliative care, based on familycentered care, in a highly complex neonatal unit. jornal de pediatria. 2024 may 13. doi: 10.1016/j.jped.2023.09.009 54. pineda r, kellner p, gruskin ba, smith j. organizational barriers to and facilitators of the successful implementation and sustainability of the supporting and enhancing nicu sensory experiences (sense) program. am j occup ther. 2024 jan 1;78(1):7801205180. doi: 10.5014/ ajot.2024.050450. pmid: 38271664. 55. powlesland j. fragile infant forums for implementation of ifcdc standards: key cornerstone of interventions for pain and stress in the baby. neonatology today. 2024 jan 1;19(1). 56. prout c. l’observation comportementale nidcap [nidcap behavioral observation]. soins pediatr pueric. 2024 jan-feb;45(336):19-21. french. doi: 10.1016/j.spp.2023.12.004. epub 2024 feb 1. pmid: 38365390. 57. rahlin m. therapy settings and service delivery models. physical therapy for children with cerebral palsy. 2024 jun 1. https://doi.org/10.4324/9781003525721no 58. abdel razeq nm, arabiat dh, ali ra, al-motlaq m. nurses' beliefs and perceptions regarding family-centered care services in acute pediatric healthcare settings. j pediatr nurs. 2024 mar-apr;75:16-22. doi: 10.1016/j. pedn.2023.11.025. epub 2023 dec 14. pmid: 38096759. 59. reynolds k, urbanowicz a, mayston m, foley s. kids+ parent infant program (pip): a community model for supporting partnerships in early 2024 • developmental observer • 27 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 developmental follow-up and support. front pediatr. 2024 may 2;12:1354971. doi: 10.3389/fped.2024.1354971. pmid: 38756970; pmcid: pmc11096506. free article https://pubmed.ncbi.nlm.nih. gov/38756970/ 60. ribeiro al, costa mfp, silva pyf, lima ro, bezerra rb, bezerra ifd, torres vb, alvarez cdl, azevedo ig, pereira sa. effects of the use of a cocoon on the autonomic, motor, and regulatory systems in preterm newborns: randomized clinical trial. arch pediatr. 2024 may;31(4):250255. doi: 10.1016/j.arcped.2024.01.005. epub 2024 mar 26. pmid: 38538471. 61. rodrigues mg, rodrigues jd, moreira ja, clemente f, dias cc, azevedo lf, rodrigues pp, areias jc, areias me. a randomized controlled trial to assess the impact of psychoeducation on the quality of life of parents with children with congenital heart defectsquantitative component. child care health dev. 2024 jan;50(1):e13199. doi: 10.1111/cch.13199. epub 2023 nov 15. pmid: 37967565. 62. sabagh k, ghaljaei f. the interventional effect of quiet time protocol on the sleep status of premature neonates admitted to the nicu. iranian journal of neonatology. 2024 apr 1. doi: 10.22038/ ijn.2023.73016.2414 63. schneider j, harari mm, faure n, lacroix a, borghini a, tolsa jf, horsch a; join research consortium. joint observation in nicu (join): a randomized controlled trial testing an early, one-session intervention during preterm care to improve perceived maternal self-efficacy and other mental health outcomes. plos one. 2024 apr 25;19(4):e0301594. doi: 10.1371/ journal.pone.0301594. pmid: 38662661; pmcid: pmc11045081. free article https:// www.ncbi.nlm.nih.gov/pmc/articles/ pmc11045081/ 64. selvanathan t, ufkes s, guo t, chau v, branson hm, ibrahim gm, ly lg, kelly en, grunau re, miller sp. pain exposure and brain connectivity in preterm infants. jama netw open. 2024 mar 4;7(3):e242551. doi: 10.1001/ jamanetworkopen.2024.2551. pmid: 38488791; pmcid: pmc10943417. https:// www.ncbi.nlm.nih.gov/pmc/articles/ pmc10943417/ 65. shao yj, lee ch, lee py. effect of intervention of music-assisted therapy on physiological parameters of premature babies-a randomized trial. journal of neonatal nursing. 2024 jun 1;30(3):243-50. 66. sheldon re, kosta sm, buehler dm. heidelise als, phd, 1940–2022: a visionary voice for infants and families. neoreviews. 2024 jun 1;25(6):e319-24. 67. sibrecht g, wróblewska-seniuk k, bruschettini m. noise or sound management in the neonatal intensive care unit for preterm or very low birth weight infants. cochrane database syst rev. 2024 may 30;5(5):cd010333. doi: 10.1002/14651858.cd010333.pub4. pmid: 38813836; pmcid: pmc11137833. free article https://pubmed.ncbi.nlm.nih. gov/38813836/ 68. solís-garcía g, cambra-rufino l, piris borregas s, carrasco pérez a, lópez maestro m, de la cruz bértolo j, moral pumarega mt, pallás alonso cr. architectural design, facilities and family participation in neonatal units in spain: a multicentre study. acta paediatr. 2024 apr;113(4):716-721. doi: 10.1111/apa.17085. epub 2024 jan 7. pmid: 38186235. 69. smith lm, harrison tm. neurodevelopment in the congenital heart disease population as framed by the life course health development framework. j cardiovasc nurs. 2024 mar-apr 01;39(2):160-169. doi: 10.1097/ jcn.0000000000000977. epub 2023 feb 8. pmid: 36752754; pmcid: pmc10406968. 70. smith m, marx w, anand ks, haunschild r, bornmann l, sizun j, roue jm. bibliometric analysis with reference publication year spectroscopy showed how key programmes drove developmental care in newborn infants. acta paediatr. 2024 jan;113(1):28-38. doi: 10.1111/apa.16996. epub 2023 oct 17. pmid: 37849411. 71. sobrinho valete co, albuquerque a, luiz ferreira ea. empathic care of neonates: a critical literature review. perm j. 2024 mar 15;28(1):46-54. doi: 10.7812/tpp/23.107. epub 2024 feb 9. pmid: 38332703; pmcid: pmc10940244. free article https:// www.ncbi.nlm.nih.gov/pmc/articles/ pmc10940244/ 72. vittner d, butler s, lawhon g, buehler d. the newborn individualised developmental care and assessment program: a model of care for infants and families in hospital settings. acta paediatr. 2024 may 30. doi: 10.1111/ apa.17300. epub ahead of print. pmid: 38816927. 74. vittner d, buehler d. gravens by design: nidcap nursery program: implementation of the nidcap model of care. neonatology today. 2023 aug 1;18(8). 75. zivaljevic j, jovandaric mz, babic s, raus m. complications of preterm birth-the importance of care for the outcome: a narrative review. medicina (kaunas). 2024 jun 20;60(6):1014. doi: 10.3390/ medicina60061014. pmid: 38929631; pmcid: pmc11205595. free article https:// www.ncbi.nlm.nih.gov/pmc/articles/ pmc11205595/ 76. zores c, gibier c, haumesser l, meyer n, poirot s, briot c, langlet c, dillenseger l, kuhn p. evaluation of a new tool "step by step with my baby" to support parental involvement in the care of preterm infants. arch pediatr. 2024 jul;31(5):306-314. doi: 10.1016/j. arcped.2023.11.004. epub 2024 apr 22. pmid: 38653616. 2025 • developmental observer • 27 l ’association nidcap france a été créée en 2013 en tant que "french chapter" autorisé par la nfi, sous l’impulsion du pr sizun et des membres du premier centre de formation nidcap français de brest. l’association a pour but de coordonner et dynamiser la recherche, le développement et la diffusion du nidcap sur le territoire francophone. elle soutient l’organisation des journées nidcap francophones, qui se déroulent chaque année dans une des unités françaises ou belges formées au nidcap. un site internet et la création de comptes sur les réseaux sociaux (facebook, twitter) ont également été créés rapidement. a partir de 2022, avec la formation de nouvelles formatrices nidcap belges et françaises, l’avenir de l’association nidcap france est discuté, afin de faciliter les échanges entre les centres de formation nidcap et de dynamiser le partage d’informations auprès du public francophone. les statuts de l’association sont révisés et le nom nidcap france est modifié pour nidcap francophone. les sièges du conseil d’administration sont également ouverts aux représentants de parents (association sos préma). des professionnels de tous les centres de formation nidcap en france (brest, toulouse) et en belgique (bruxelles), mais également des représentants des futurs centres de formation nidcap (valenciennes, saint-brieuc et grenoble), des professionnels certifiés et adhérents à la nfi, sont élus membres du nouveau bureau ou présents au conseil d’administration en 2022. le bureau actuel de l’association nidcap francophone est composé de: sandra lescure, md nidcap trainer, toulouse, présidente aurélie guillou, rn, nidcap trainer, saint-brieuc, co-présidente isabelle olivard, rn, nidcap professionnal and nbo trainer, brest, trésorière sylvie minguy, rn, nidcap trainer, brest, co-trésorière céline prout, rn, nidcap trainer, toulouse, secrétaire marie-cécile andro-garçon, md, nidcap professionnal, saint-brieuc, co-secrétaire l’association continue de soutenir les missions pour lesquelles elle a été créée il y a 12 ans, et réfléchit à de nouvelles perspectives, en se structurant. elle a comme ambition de développer plusieurs commissions : commission pédagogique pour soutenir la formation et la diffusion du nidcap, en favorisant la coordination entre les différents centres de formation nidcap francophones afin de recueillir des indicateurs d’implantations des programmes de soins. un des buts est de pouvoir partager entre formatrices du matériel-support de formation. un autre est également de coordonner les formations au sein du territoire avec la présence de plusieurs centres de formation. l’association permet également aux formatrices de se soutenir mutuellement et de partager leurs expériences de formation. enfin, pour l’année 2025, un des objectifs est d’organiser des webinaires en français sur la thématique de l’observation, afin de soutenir les certifiés nidcap des différentes unités de néonatologie francophones. commission scientifique pour travailler avec les équipes organisatrices à l’élaboration du programme des journées nidcap francophones (jfn). l’autre objectif est également de dynamiser la recherche sur le nidcap. actuellement cette commission travaille sous l’impulsion de véronique pierrat à l’évaluation de l’impact de l’implantation des programmes fine 2 et cle dans les différentes unités de soins. commission communication pour diffuser des informations fiables sur le nidcap, les soins de développement centrés sur l’enfant et sa famille, en créant un nouveau site web qui est en cours d’élaboration, l’initial ayant été fermé, qui permettra au public francophone d’avoir des informations locales sur la diffusion du nidcap en france et en belgique, la traduction en français de certains articles importants ou la diffusion des informations apportées par la nfi. ce site sera relié au site de la nfi. cette commission réfléchit également à la présence de nidcap francophone sur les réseaux sociaux pour pouvoir atteindre un plus large et plus jeune public. les membres de l’association se réunissent par zoom de façon régulière et en fonction des missions et objectifs fixés. depuis 2022, il y a eu environ quatre à cinq réunions par an. l’assemblée doi :10.14434/do.v18i1.40905 perspectives mondiales des soins de développement nidcap francophones aurélie guillou and sandra lescure, nidcap trainers l’association nidcap france a été créée en 2013 en tant que « french chapter » autorisé par la nfi, sous l’impulsion du pr sizun et des membres du premier centre de formation nidcap français de brest. 28 • 2025 • developmental observer générale se fait chaque année lors des journées nidcap francophone. les membres du comité d’administration sont élus tous les trois ans. la prochaine élection aura lieu en 2025. lors des dernières journées nidcap francophones en 2024, à toulouse, il nous est apparu opportun de faire un état des lieux de l’implantation du nidcap en france et en belgique. un questionnaire a été envoyé à toutes les équipes formées au fine 2 ou au nidcap (72 établissements de santé sollicités (63 français et 9 belges)/ taux de réponse à 69,4%), et les résultats préliminaires ont été présentés lors des journées. la perspective est de monitorer plus précisément l’implantation des sdcef, du nidcap sur nos territoires francophones. en france, il y a actuellement 20 unités de néonatologie (nicu) avec des certifiés nidcap dont certaines ont aussi des certifiés fine. on compte également 32 autres unités avec des certifiés fine 2. en belgique, le nidcap est implanté dans 17 des 19 nicu. dans les néonatologies sans soins intensifs, la moitié sont formées au programme cle ou fine 2. les journées nidcap francophones connaissent chaque année un franc succès. en 2024 étant donné l’organisation du 35ème trainers meeting sur toulouse, il a été proposé d’y accoler les 12èmes jfn. le but était de permettre aux certifiés nidcap/fine ou cle francophones de côtoyer les acteurs du nidcap du monde entier. ainsi la dernière journée du trainers meeting était commune avec les jfn qui se sont poursuivies par une journée uniquement francophone, où les congressistes ont pu participer à plusieurs ateliers pour échanger sur leurs différentes pratiques. ils ont pu également assister à la rubrique « partage d’expériences » où chaque unité peut venir présenter les avancés dans son équipe concernant les soins de développement. la thématique était « soutenir l’implantation du nidcap dans les différentes unités de soins ». 150 personnes étaient présentes pour ces journées francophones. jusqu’à présent, nous limitions la présence à 3 ou 4 personnes par unité de néonatologie afin de permettre des ateliers et des échanges entre participants. ces journées sont également ponctuées d’une remise des diplômes des certifiés de l’année ainsi que d’une soirée dansante qui permet de partager dans la convivialité. les prochaines jfn ont lieu à montpellier les 25 et 26 septembre 2025 et ont pour thématique : "construire une unité de néonatologie ne 2025 : architecture et bien-être soigné/soignant ". en 2025, l’association nidcap francophone souhaite s’ouvrir au québec et se propose d’intégrer dans son comité d’administration isabelle milette qui est en cours de formation pour devenir formatrice nidcap à montréal. en bas de gauche à droite: fredérique berne-audeoud, pédiatre, formatrice nidcap en formation, grenoble; jacques sizun, professeur emérite université toulouse, directeur retraité du centre de formation nidcap de toulouse; sandra lescure, pédiatre, formatrice nidcap et directrice du centre de formation nidcap de toulouse; céline prout, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de toulouse; nathalie ratynski, pédiatre, formatrice nidcap retraitée, centre de formation nidcap de toulouse; delphine druart, infirmière puéricultrice, formatrice nidcap et apib, centre de formation nidcap de bruxelles en haut de gauche à droite: marie-cécile andro-garçon, pédiatre professionnelle nidcap, directrice du centre de formation nidcap de saint-brieuc; aurélie guillou, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de saint-brieuc; véronique pierrat, pédiatre professionnelle nidcap, chercheure inserm équipe epopé-inserm, paris; isabelle glorieux, pédiatre professionnelle nidcap, toulouse; sylvie minguy, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de brest; peggy laurant, infirmière puéricultrice, formatrice nidcap, centre de formation nidcap de valenciennes; juliette barois, pédiatre professionnelle nidcap, directrice du centre de formation nidcap de valenciennes; inge van herreweghe, pédiatre professionnelle nidcap, directrice du centre de formation nidcap debruxelles 6 • 2025 • developmental observer f a m i l y v o i c e s l essons i learned from a rare twin pregnancy and a dutch nicu. to be honest, when i became pregnant, the chance of having twins wasn’t even remotely a factor in my head. in fact, when the ultrasound technician told me there were two babies in there (after a previous scan had definitely only found one), i might have accused her of lying in rather colourful language. twins had never, ever been on my radar, and there were none in my immediate family, and the fact that we had been warned at our first ob/gyn appointment that we were now high risk, catapulted us into a new world. we started to learn more about multiples, and a whole new language evolved. our twins were monochorionic, diamniotic, sharing a single placenta but having their own amniotic sacs. from the first conversation with our doctors, we were educated about the possibility of a premature delivery, because this was indeed probable with our babies. however, when prematurity is accompanied by a rare complication, and coupled with being a foreigner in the country you are giving birth in, the situation becomes a confusing, and sometimes terrifying place. twins with a rare disease, born at 31 weeks, in a hospital 16,000 kilometres from my family and friends in a country where i didn’t speak the language. this is my story. a difficult diagnosis at 24 weeks, we went for a routine scan. we’d been scanned routinely every two weeks, and things had been going fine. but this appointment was different – the ultrasound technician called the doctor in to take a look. “we think you have developed twin-twin transfusion syndrome (ttts) and need to send you to a specialty hospital.” we’d heard of ttts, but had not expected to be diagnosed so late (or even at all, given that there was only a small chance of it happening), and yet here we were, driving down to the national referral center for twins in the netherlands, as fast as was legal, and terrified of the "what next". when we arrived, our diagnosis was confirmed, along with a secondary diagnosis, something even rarer called twin anemia polycythemia sequence (taps). this disease came with additional worries and fears – it had only been recently described, and there was not a lot to know about it. our care team were excellent though and explained everything carefully. again, it was reinforced to us that the girls would be born prematurely, but the waiting game was in full swing. for us, we were fortunate that the ttts resolved spontaneously. this happens in rare cases, however our taps this powerful story is more than just a birth narrative — it is a journey through fear, uncertainty, and ultimately transformation. what began as a pregnancy marked by high-risk diagnoses, prematurity, and the challenges of giving birth far from home became the foundation for a new mission. stephanie’s experience — filled with worry, nicu alarms, and the constant weight of “what if” — shaped her into something more than a survivor. today, she is a guiding force in improving care for infants born too soon: a passionate parent advocate for monochorionic twin pregnancies, a researcher advancing our understanding of rare complications like ttts and taps, and a voice for families navigating the nicu. her story reminds us that empowering parents, during one of the most vulnerable times in their lives, can inspire change well beyond the walls of the hospital. two tiny heartbeats: a journey through a twin pregnancy and care in a dutch nicu stephanie ernst doi:10.14434/do.v18i3.42181 with the girls in the nicu column editors: livia nagy-bonnard and debra paul 2025 • developmental observer • 7 f a m i l y v o i c e s progressed steadily. each appointment was just a waiting game, and then at 31 weeks, we were admitted as the ultrasound showed grim signs for our recipient twin. i was admitted, had my first round of steroids, and was told within 48 hours, we would have our babies. one of the things that was reassuring at the time was the opportunity to visit the nicu the night before the girls were scheduled to arrive. it gave a sense of control – that things were already being planned and we could meet some of the team that would be waiting for us. i will never forget seeing those two empty incubators, side by side, and the sounds and smells of the environment. and then they were here the girls were born on a cold december morning, i remember the rush of people into our room, the monitoring, the chatter and the building anticipation and anxiety over the “what next?.” the conversations, the lights, the smell of the operating theatre, this all added more feelings of being overwhelmed and worried. the moment they lost my husband somewhere in the hospital, and had to find him to bring him back, the moment the drapes went up, the tugging, the pulling, and then, the first twin was born. it’s a girl! she didn’t cry. they popped her over the curtain to say hello, and i remember hearing someone singing happy birthday in the background. next thing i knew, our twin’s sister was born. she was very displeased with the early delivery, loudly protesting her change of environment. they popped her little red face over the curtain, before whisking her away. then, they brought our twin that was delivered first back to me to say “hello.” a little, pale face resembling a troll doll looked grumpily at me. i cried and told anyone who’d listen she looked like a potato. but she was safe and stable, although needed a blood transfusion. both girls were whisked off to recovery, with my husband following, leaving me alone in the operating room, processing everything that i’d just been through. it wasn’t until three hours later that i was reunited with my girls in the nicu. i was still unable to move, still very much in shock, but when they placed both girls on my chest for kangaroo care, somehow, this all didn’t matter. that moment was a milestone for me – everything that i had been through over the past couple of months no longer mattered. this was a moment which didn’t erase the past, but it made it easier to live with. this is the moment where i became a firm, fast supporter of kangaroo care, especially for multiples, and that there were no barriers when it comes to supporting two babies or more. life in the nicu our first nicu was attached to the hospital that had monitored us from our initial diagnosis. this was an academic hospital, and everything was on a schedule. it wasn’t that we weren’t involved in their care, but rather we were vulnerable first-time parents who had been through a tense pregnancy, and we felt more hands off. what was wonderful was that kangaroo care was encouraged, and our team kept us updated and informed. what was also amazing was the use of video cameras, where my family could log in from the other side of the world and see the girls. when we couldn’t be there, it was reassuring to be able to tune in and see them on the screen. we were given a phone number too, and told it was ok to go out and call in anytime – something that i needed to be reminded to do. i remember the day one of the nurses in the unit told me – you need to go out and see the city. go have a cup of coffee, it’s ok, we will call you if you’re needed here. i went out and went to the baby store and bought two outfits for the girls. the outfits were miles too big, but it was a sense of accomplishment to buy something for them after so much uncertainty. we had conversations with the team about their futures, about what would the future hold, and the answers were always “we’re not sure, but we’re going to look after them.” it was refreshing honesty, but at the same time, not always reassuring. but we knew we were getting good care. and then the day came, where we had the conversation about transporting them to another hospital which was closer to home. if all were going well, this would happen in the next few days. on christmas eve morning, we got the call. one of our twins was already on her way in the ambulance to our hometown, and the other would follow her in a few hours. our girls came “home” for christmas. being closer to home you would think after the emotional climax of the last section that this would be an inspirational and moving moment … it wasn’t. you see, while we knew one baby was on the move, we did not know if she made it. or if her sister made it. no one had called us to let us know they had arrived. so, after lunch, a collection of items showing our complex journey through my pregnancy 8 • 2025 • developmental observer f a m i l y v o i c e s i went down to the hospital and asked at the desk of the children’s ward if our daughter’s had arrived. the shock and embarrassment were evident when they realised that no one had called me. i was taken to the nicu immediately and reunited with my girls – who were indeed there, in one piece, and had already been visited by santa! a small gift was on their cabinets, and the team were very quick to fill us in, tell us the routines, and make us feel at “home.” what was a huge relief was the fact they were so close by. what we were not prepared for was the shift in responsibilities. at the bigger hospital, it was a lot more hands off. while we could do things like diaper changes, etc, the daily weigh checks and temperatures were always handled by staff. procedures – and there were many due to the nature of taps – were always done when we were out of the room. here, we were encouraged to be in the room, and to do more and more of our daughters’ caregiving activities. we became part of the routine, temperatures, feedings, bathing, even holding and comforting the girls during painful procedures. it felt amazing to be hands on parents. of course, things are never quite straightforward, and we knew that it was highly likely that one twin would come home before the other. but when this happened, the staff were amazing and made accommodations that we could still bring our daughter that had been discharged into the unit when we were there for her sister. small moments like this meant the world. and finally, both girls came home. twins in the nicu what is interesting is the difference in having multiples in the nicu, as opposed to having a singleton. you have days when there are ups, downs, and a whole rollercoaster of emotions just like everyone else – but add in days where ups are happening simultaneously with downs, and you are experiencing worry, and amazing milestones all at once. we were fortunate that our babies were always placed side by side, meaning that we could spend time with them together, shifting our focus between them with ease, but sometimes this is not always the case. it is also important to recognise the twin bond, but to treat the babies as individuals. this might not sound clear, but giving them time together, but also, when it comes to updates, ensuring that you speak about them as individuals. another interesting thing is visitor rules. many nicus have a one parent/baby rule, but multiples are sometimes treated as a unit with only one parent for both babies. this does not carry forward to the real world and it can make the stay stressful as one parent tries to do the work of two. it takes a little out of the box thinking, as twins are not the rule in the nicu, but they are more likely to end up there. when you do not speak the language adding to all this was the fact that i did not speak dutch confidently. in fact, i spent half of my dutch classes in the throes of hyperemesis (surprise! did not mention that one previously) and still to this day do not remember how i passed my b1 exams (language proficiency). i did, however know exactly where each and every rubbish bin was along the route to my class. navigating a complicated pregnancy is hard enough, but then the additional stress of prematurity and nicu in your second language is a challenge. parents who are not confident in the local language have an additional stress – they are already scared and worried and adding in the fact they have to translate everything in their heads, and concentrate on asking questions confidently to be understood adds to what is already a tough situation. i was fortunate, as most dutch people speak english well and my husband is a native speaker. there were occasional language barriers and tough situations arose like the night one nurse told me that i’d lived in the netherlands for 18 months, therefore i should speak dutch and refused to speak with me in english. i was processing everything that was around me, and trying to translate in my head was not really on my list of priorities. i wanted to be there for my children, and this caused me additional stress. the space in my head for translations was taken up by their needs, their care, and their progression (and rubbish bin locations from dutch school days!), and this created additional stress. the one point i think that i need to share here, is that when you realise a patient is navigating things in a second language is to take the time to check they understand you, that they have the space to process information, and that resources are available in their own language – or if someone is able to translate. it makes a world of difference and lightens what can be an additional burden. rare is an additional burden on top of everything else, having a rare disease diagnosis added an extra layer to our days in the nicu. the academic hospital understood the disease and were experienced to a degree with treating it. however, at the local hospital, we were an oddity and stephanie with her daughters today 2025 • developmental observer • 9 f a m i l y v o i c e s felt like we had to repeat everything over and over and found ourselves frequently reminding people of the right diagnosis. the fact that so little was known about the disease, and that there was a lot of uncertainty around long term outcomes which added to our stress. to this day, there are still a lot of unknowns, but we face those with the attitude of veteran rare disease parents. but back in the nicu, we were dealing with an additional layer of stress and unknown. parents in this situation need support when they are dealing with a rare diagnosis. while specific information is not always available, listening to parent concerns and helping them learn more about their infant’s diagnosis will always be of benefit. and parents, if you are in this situation, i urge you to find communities and support networks. peer support, particularly regarding rare diseases, connects you with people who understand and have been down the same path. it is essential complementary health care. and all the other things i want to say, but cannot fit into a heading… i do not look back on my nicu experience as a negative time in my life. .it helped shape the direction i took in my life and who i am today – a parent of twins, a parent advocate for monochorionic twin pregnancies, a researcher, and a charity founder. involving parents in the care of their nicu babies empowers them. it shapes how they remember their situation, and it gives them the feeling of control over a situation that sometimes feels out of control. kangaroo care has all the scientific benefits we know about, but what it also offers is something that is not peer reviewed – the feeling that no matter what we have been through, that right now, in this moment, things are going to be ok. multiples are not scary. they need some additional considerations, but the reality is, it is just about taking a few additional steps to ensure that the needs of these babies and their parent are met. for family and friends – do not forget to ask how the parents are as well. everyone is asking about the babies, but that small question of “how are you?” can make a world of difference. take them out for coffee. bring them cake. talk about the normal thing. we need to hear about the outside world as well, as our lives are just a room full of beds, babies, machines, and routines. and as a parent that has experienced life in the nicu, you never, ever forget the smell of the hand sanitizer. it comes back and there are moments where you are transported back to the darkest days, the sounds, and those feelings are overwhelming. but you learn that this passes, and that life goes on. you remember things in different ways…you have an experience that shapes who you are, and how you navigate the world for the years to come. there are two things in life for which we are never truly prepared: twins. the quote from humourist josh billings could not be any more accurate. i was definitely not prepared for twins, but i’m grateful for the lessons they taught me. • infants are considered individuals, persons, collaborators in care, supported and nurtured by their parents, enhancing their healthy overall development, well-being, and full potential. • families are considered infants’ key nurturers, advocates, and primary caregivers as well as collaborators in care decisions. • infants, families and professionals are integral partners of the health care team. • hospital environments and culture support and nurture infant and family relationships, and promote individualized strengths, health, growth, and development. • the nfi provides the framework for nidcap care with educational resources, formal training and mentoring to healthcare professionals and families. adopted by the nfi board, may, 2025 vision a global society in which all hospitalized infants and their families receive care in the evidenced-based nidcap* model. *the newborn individualized developmental care and assessment program (nidcap) model: mission to improve the future for all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap* care by providing and assuring the quality of nidcap education, training and certification for professionals and hospital systems. developmental observer 20 23 | v o l 1 6 | n o . 1 the official publication of the nidcap® federation international the world needs more nidcap, and all clinicians and parents need to learn about it. —yamille jackson (continued on p. 2)10.14434/do.v16i1.35766 inside family voices ................................................ 1 editorial ............................................................ 2 abstracts ......................................................... 6 in translation .............................................. 17 nidcap training centers ................ 19 worldwide global perspective .............................. 22 -new zealand nidcap trainers meeting .............. 25 2023 nidcap on the web ............................ 32 nidcap training centers ............... 34 how it all started when larry and i welcomed our son zachary 12 weeks prematurely in 2001, life changed. it was medically necessary to deliver zachary early, risking his life to save mine, and while i started feeling better, he struggled. to the nicu staff, zachary was one of the 13 million babies born prematurely that year, but to us, he was our world. i owned a consulting firm in risk management engineering for the oil and gas industry. i took an indefinite leave to be with zach all day, every day, in the nicu (a luxury that, unfortunately, few in the usa have). i was a new and imperfect mother that still believed that nobody should suffer alone. i needed to be there for zach to nurture and comfort him and, most importantly, to give him a reason to fight and survive. to this day, my mom has healing and calming superpowers over me, so i figured i had them for zach too. we were fortunate to be in a progressive hospital, and the staff supported my need to care for our baby. our touch turned struggles into possibilities. the nicu staff encouraged me to ask questions. a nurse shared that when they our true story of love, science, and a transformative promise f a m i l y v o i c e s doi: 10.14434/do.v16i1.35784 by yamile jackson, phd, pe, pmp 2 • 2023 • developmental observer grow, former preemies may not like to be touched, and i know isolation is the worst type of punishment. i didn’t want that for zach. humans learn by association, and i wanted to show zachary that pain does not always follow touch. our touch was healing, comforting, and loving. i appreciated it when nurses comforted him verbally before and after painful procedures, as they would with an adult. i appreciated it when they came on their breaks to touch or hold zachary so he felt loved. kangaroo care was introduced the day after he was born as “something nice to do for you and your baby.” i remember when the method started when i was a girl in colombia and heard about it. this started our journey with kangaroo care, and we held zachary daily for hours each day. kangaroo care eased my c-section pain and fulfilled my need to nurture my baby as nothing else did. my sadness and worries went away when i held zachary. nurses did many interventions while i held him (i.e., blood transfusions, evaluations, change of diapers, heel sticks, and anything i could convince them to do while he was calm on my chest). i fell asleep several times, holding him; it was by far the most restoring sleep since his birth. the day everything changed. when zachary was three weeks old, challenges intensified when tropical storm allison flooded houston, texas, and the hospital and life-support equipment lost power we panicked. larry and i managed to arrive at the hospital, and i held zachary skin-to-skin for hours, keeping him warm. larry received a crash course on how to “bag” him and took turns with the staff every 30-45 minutes. in those very dark hours, i promised zachary his pain and struggle to survive were not in vain. he was evacuated. a cable television network, tnt made a movie called “14 hours” about the flood, the evacuation, and zach’s story. like most nicu parents, we felt guilt, worry, uncertainty, lack of control, and sadness, among other feelings. night after night, for five months, we left one of two different hospitals without our baby. my newly found maternal instinct and specialization in ergonomics and human factors engineering helped me be zach’s mom in the nicu. we were part of a team and had a job to do. the nicu staff cared for zach’s physiological needs for survival. we gave him a sense of security by being present, reassuring, and holding him in kangaroo care. zachary, like every human, likely needed to feel loved to find a reason to fight to survive. family voices, continued from p. 1 editorial in the nicu with support (continued on p. 3) the legacy of heidelise als lives on and the breadth of the nidcap work represented in this issue is a testament to the strength of nidcap. abstracts from the 33rd nidcap trainers meeting held in bad boll, germany last october come from nine countries, a truly global effect. profiles from some of the invited presenters and their topics raise so many important issues. kelly janssens shows how being political can benefit the work we do, and karl heinz brisch, who unfortunately was unable to be with us shares his important work on outcomes. gretchen lawhon nicely summarises the meeting in her letter to heidi highlighting so much of the meeting. i am sure heidi would love to be kept informed in this way. regular features of the work of the nidcap training centres is demonstrated by the team at the edmonton training centre in canada. we also learn about how developmental care and nidcap is expanding throughout new zealand. a new feature has been introduced in this issue – in translation. maria maestro lopez has expertly translated an article written by jeff alberts into spanish. we would like your feedback on this approach and suggestions on how we could expand this feature. we would like to reach out to those members from different language backgrounds. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia cover photo used with permission 2023 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board i kissed him after every stick and painful intervention except when i was not allowed. as bad as we thought we had it as parents, he had it worse, so we kept a positive attitude and concentrated on the good news. there were days when we hung on to the fact that he was breathing. “i love zach, but how does he know i love him?” i worried that zachary felt abandoned every night (he didn’t know we were not allowed to stay with him at night or how long we would be away). i worried he wondered why i let people hurt him (he didn’t know they were trying to save his life). i worried that zachary felt rejection or guilt when we did not hold him or touch him when he was hurting and needed us the most (he didn’t know we were not allowed to touch him). as a human being, he was tiny, but he was a human being nonetheless, and he had the right to be treated with love, compassion, and respect. “how do you calm a baby?” calm humans, especially babies, feel less pain, sleep and eat better, leading to fewer interventions, less medication, better healthcare outcomes, less cost, and increased satisfaction. before a painful procedure, nurses tell adults to relax because “when you relax, it will hurt less.” since babies do not respond to verbal instructions, i wanted to find ways to calm zach. nurses and therapists taught me how to use my hands to comfort him, but who would comfort him when we weren’t there? a turning point a pair of filled garden gloves simulated the weight, shape, and containment of our hands the way nurses taught me. larry and i slept with gloves to impregnate our scent so zachary would feel our presence even when we were not there. the nurses could immediately see the calming effect of “the gloves” on the monitors and how they helped zachary. however, they could not see how they helped me. leaving the gloves with our scent made it easier to separate from zach. a part of us always stayed with him. at night i always left the nicu with the gloves positioned where my hands wanted to stay. the staff also used the gloves to position zachary and his equipment and soon noticed he was calmer and sleeping better at night or when we were not holding him. once at home, a nurse called me requesting “the little gloves i made for zachary for the rest of the nicu.” this was 4 • 2023 • developmental observer a turning point…i found a way to give back and solve a need of families and staff in the nicu; however, as a risk engineer, i knew that my homemade and hand-made version had many risks. i could take risks for my baby but not for other babies, so i founded “nurtured by design.” i was in a unique position because i was solving a problem that i lived with, and i had the drive, the education, and the experience to do it. after three and a half years of research and development and the involvement of thousands of stakeholders, we finished our first nicu device, and i called it “the zaky®.” a pair of the zaky hug® extends the touch and scent of the parents and provides a calming and predictable micro-environment for all babies regardless of size, medical condition, or developmental stage. it virtually replaces all developmental care devices and provides a simple and effective tool for nidcap as a non-pharmacologic pain management solution, family-integrated care, and effective for babies experiencing opioid withdrawal and for safe to sleep. i first met dr. heidelise als at the gravens conference in florida when she presented information about nidcap, and it made sense to me. our passion for paying it forward and improving the lives of infants and families in 2007, nurtured by design became my full-time job. i decided to add kangaroo care (kc) to my advocacy work. my research showed two main roadblocks for kc: safety and awareness/education. to provide safety, we spent three years engineering the zaky zak®, starting with my own experience holding zachary – i wanted a device that is safe, hands-free, comfortable, easy to wear, unisex, that provides constant containment and a predictable experience for the staff, the parent, and the baby. it offers easy, quiet, and immediate access for transfers, breastfeeding, pumping, and interventions. the stability provided by the zaky zak® reduces risks, prevents injuries (like unplanned extubations and falls), and, as always, considers the entire supply chain (inventory, ordering, storing, maintenance, training, quality control, etc.) it is also the backup for when incubators lose power and evacuations. in 2010, i was certified as a professional kangaroo caregiver by dr. susan ludington and the united states institute for kangaroo care. soon after, i started the international kangaroo care awareness day on zachary’s 10th birthday (may 15th), which is now celebrated globally. www.kangaroo.care provides free resources and information for a fun, non-threatening, non-judgmental way to celebrate kangaroo care and increase its awareness/education. in 2014, oprah met zach, and she featured our story. the video is on our homepage www.thezaky.com. the gates foundation funded us to develop a mobile app for parents called the zaky® to track kangaroo care and other activities and facilitate kangaroo-a-thons. in 2018, i was honored to sponsor dr. als to present at mary coughlin’s conference in belgium. i saw her again at my first nidcap trainers meeting in october 2019 and met many professionals who told me they love the zaky®, which warmed my heart. what i remember most about dr. als is when she said, “you are one of us,” and she also wrote a letter of support for me for a grant. her life was well lived, and her legacy will continue to be multiplied by phenomenal professionals worldwide that give every baby the best possible chance of life, not just survival. i achieved the trauma informed professional (tip) certification from caring essentials, inc., and realized that the zaky® was aligned with all the elements of trauma-informed care. i also became more active in research, and the list of publications is on our website. our philanthropy includes donating the zaky® products to the most vulnerable. the most recent large donation of the zaky® packages went to every baby in seventeen nicus in ukraine, where parents and babies are experiencing more than usual trauma and are fighting for their survival and their country. we collaborated with the nidcap federation international, other parent organizations, and the march of dimes for logistics and delivery. i also host the “in touch with experts: live,” where we talk in layman’s terms with experts about topics that interest parents. zachary will never remember, but larry and i will never forget. zach is our cio (chief inspirational officer) and grew up to in 2014, zach met oprah winfrey, who featured zach’s story www.kangaroo.care www.thezaky.com 2023 • developmental observer • 5 be a loving, intelligent, witty, handsome, funny, caring, talented, and hard-working adult. he has visited over 20 countries with me, takes fantastic photos, and is gifted and creative. zach is now in college and is passionate about cars. our story was possible because we were part of the nicu community caring for him. i am grateful for the work behind the scenes by researchers like dr. als. i am aware that she and thousands of professionals influenced the nicu staff that cared for zach. globally, we are mourning her loss, but i am confident that nidcap will only strengthen. dr. als was an exceptional woman and teacher, who was inspirational, compassionate, and approachable. those who met dr. als realize what we lost and feel honored to have been touched by her life. dr. als inspired us, taught us, and gave us the knowledge to treat every baby as a human, as someone’s child that is part of a family that deserves compassion, respect, and individualized nurturing care. the world needs more nidcap, and all clinicians and parents need to learn about it. my commitment is to continue supporting your work (on behalf of zach) and offer tools and services that empower you to implement and teach nidcap so that every family can have the best possible quality of life for a lifetime. "zach is our cio (chief inspirational officer)" nidcap federation international board of directors and staff 2022–2023 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: apoorva.sudini@pwc.com charlotte tscherning, md, phd division chief of neonatology, sidra medicine, doha, qatar email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 6 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aim to present the theoretical background of narrative medicine, highlight its specificities in the neonatal period, and show how nidcap is relevant at all stages of the narrative process. methods comparative analysis of the theory on nidcap and narrative medicine. results/findings the narrative process defined by rita charon1 is divided into three stages. attention is the first stage. it refers to the way practitioners listen to the patient’s behavior and talk. it needs a special state of mindfulness and attention, focused and open-minded. in the neonatal period, we listen to the baby’s behavior and to the parent’s story and behavior. the nidcap observation tool, naming, describing, and preselecting specific behaviors, helps us to listen to premature babies. with the help of narrative medicine, we can improve the way we listen to parents using our close reading session skills. during the close reading session, we learn to be actively aware of how the stories are told: perspective, form, temporal structure, plot, and desire. representation is the second stage. it refers to the way practitioners write what they have learned from the patient. when health professionals write, they discover aspects of the experience that were not evident to them. writing is revealing what was present but hidden. it reveals some truth about the patient, and about the writer themselves. it could be seen in the words chosen, or in the form of the writing. about the words, roland barthes2 makes a difference between denotation and connotation. in the neonatal period, we write about the baby’s behavior, and about the parents' stories. considering the baby’s behavior, the guidelines proposed to write the nidcap report reflect the care philosophy supported by nidcap. by introducing the baby by his name, we recognize him as a person. by using the active verb, he is a living person in motion. by writing in a fashion that is readily understood by and is supportive of parents, we testify to baby and family-centered care. by describing a baby as available to actively seek well-modulated functioning to approach stimuli, we defined them as an actor of their own development. respecting and endorsing those writing guidelines is pushing us to change our care philosophy. considering the parents’ stories, narrative medicine proposes to use a parallel chart. in this file, you write what the parents tell you, but also how you feel and react to it. once written, the parallel chart is used as a starting point for the reflective practice recommended during the nidcap process. affiliation is the last stage of the narrative process. it refers to how the patient and the practitioner share the writing producing an efficient and trustful partnership. this implies that they believe in the power of words, as john langshaw austin3 explains in the speech act. in the neonatal period, what is written on the baby by the professional and/or the parents can affiliate parents and health care professionals for the sake of the premature baby. the way nidcap recommendations are written is a tremendous example of this speech act. including parents’ preferences is a sign of affiliation with parents. starting recommendation with the behavior of the baby, and ending it with his developmental goal, is a sign of our affiliation with the premature baby. relevance to nidcap and conclusion to know the theory of narrative medicine helps us to understand how narration plays a powerful role in nidcap for the parents, and the professionals. references: 1. charon r. narrative medicine: honoring the stories of illness. 2006. oxford university press. 2. allen, g. roland barthes (1st ed.). 2003. routledge. https://doi. org/10.4324/9780203634424 3. oishi e. austin’s speech act theory and the speech situation, esercizi filosofici 2006, 1 (1):1-14. issn 1970-0164 narrative medicine and nidcap: what can we learn from each other? frédérique berne audeoud university hospital of grenoble, france doi:10.14434/do.v16i1.35768 the editorial team of the developmental observer is looking for nfi members who may be interested in becoming a reviewer for the do. if interested please send an email and a copy of your cv to the senior editor at developmentalobserver@nidcap.org 2023 • developmental observer • 7 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aim nidcap neurobehavioural observations are conducted routinely in our nicu, and recently have been augmented with video. this project evaluated the quality of sleep of infants in our level 3 nicu, as part of ongoing education and quality improvement. methods a convenience sample of preterm infants were recruited for nidcap observations with video. parents provided informed consent. infants were observed in their beds and/or while held. these observations occurred while the infants slept, and other interventions were minimal. behavioural states were assigned during observation according to the nidcap manual for naturalistic observation of newborn behavior.1 the number and frequency of state changes, the longest epoch of state and its duration, total time in each state, and length of sleep-wake cycle were calculated. a sleep-wake cycle was defined as a period of sustained deep sleep (ds) followed by spontaneous arousal to quiet awake.2 parents, nurses, and neonatologists were asked to estimate the length of infants’ sleep wake cycles. results/findings nineteen infants were observed for a total of 38 observations. infants were observed in their bedspace in the nicu at various times of the day. no attempt was made to modify the environment or to replicate the environment when an infant was observed more than once (13 infants). twenty-four observations occurred while the infant was in a crib and 14 while held. twelve of these 14 held episodes were skin-to-skin with a parent. data are presented for 17 observations; further analysis is ongoing. • the mean length of time between state transitions was 2 minutes 39 seconds (range 1’12’’ to 10’15’’). • the longest epoch of any one state during any one observation was a mean of 12 minutes 42 seconds (range 3’ to 33’). most of these epochs were of light sleep, state 2a. • ds was observed during 9 of these 17 observations. the infant was being held during 7; the percentage of time in ds while held ranged from 6.6% to 80.5%. for the two observations of infants in the crib, the percentage of time in ds sleep ranged from 5.1% to 17.5%. • of the eight observations for which no ds was observed, the infant was always in the crib. • five infants were observed both in the crib and while being held. all five achieved more ds when held (up to 80.5% of the time) compared to the crib (maximum 5.1% of the time). • parents, neonatologists, and nurses were unsure of the length of sleep-wake cycle. when asked to estimate, responses varied between 20 minutes and 3 hours. • very few infants achieved a sleep-wake cycle, as defined above. limitations polysomnographic identification of sleep-wake states was not possible. this could have improved the accuracy of the assignment of behavioural state. only five of 19 infants were observed in both conditions (held and in crib), which may limit the validity of the comparison between “sleep while held” and “sleep in crib”. the physical environment of each infant’s bedspace was not standardized, which may have impacted the quality of sleep. relevance to nidcap the nidcap naturalistic observation is a clinically useful tool to assess the quality of sleep in the nicu. observation of sleep states and sleep wake cycles may be one method of assessing improvements in the quality of neurodevelopmental care in the nicu. conclusion preterm infants in our nicu had suboptimal organization of sleep, with frequent transitions of state, little if any deep sleep, and poorly defined sleep-wake cycles. infants achieved more deep sleep when held than in their crib. our results demonstrate the critical developmental impact of prolonged close contact with parents and will guide practice change. references: 1. als h. manual for the naturalistic observation of newborn behavior. copyright nidcap federation international, 2006, 2015. 2. graven sn, browne jv. sleep and brain development. newborn and infant nursing reviews. 2008;8(4):173–9. quality of sleep in a level 3 nicu chabba r1,2,4, tyebkhan j1,3,4 1stollery children’s hospital, division of neonatology, 2university of alberta, department of medicine, 3university of alberta, department of pediatrics , 4edmonton nidcap training centre canada (entcc), edmonton, ab, canada doi:10.14434/do.v16i1.35766 8 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 doi: 10.14434/do.v16i1.35771 cosimo ac1, boncompagni a1, bianchini a1, cipolli f1, cuomo g1, di giuseppe m1, lelli t1, lugli l1, muzzi v1, paglia m1, pezzuti l1, sabbioni c1, salzone f1, sorgente mc1, ferrari f2, berardi a2, bertoncelli n1 1department of mother's and child's health, neonatal intensive care unit, aou modena – italy, 2university of modena and reggio emilia – italy background preterm babies and their parents face a long and often complex journey in the newborn intensive care unit (nicu) from admission to discharge. as the parent-baby triad is the core of family centered care, parents should be welcomed in the nicu, integrated, and involved in their baby’s care. nicu staff should support parents in recognizing their baby's needs and in acquiring parenting skills. this approach could help to promote and establish the bonding between parents and babies, despite obstacles due to early separation and admission to the nicu. welcoming the parents of hospitalized babies in the nicu is always an important step in a continuous and multidisciplinary process. the nurse becomes the facilitator in the relationship within the triad. to the best of our knowledge, no studies described qualitatively structured parents’ involvement templates to be used in the nicu, but rather checklists that report the knowledge and skills that parents should acquire during the hospitalization of their baby.1,2 welcoming parents in the nicu has a dual function: it offers parents the opportunity to learn and understand their baby’s cues and supports professionals to guide them during their journey until the discharge.3 aims developing a specific and structured parent involvement template has two aims. first, to standardize the approach of the nicu professionals to the care of the babies; second, to support the parents in the process of acquiring their parental skills before discharge and to measure their level of self-efficacy (table 1). methods the standardization of nicu professionals’ behavior is assessed by identifying the number of professionals who fill out the parents’ involvement template. the level of parental self-efficacy is monitored through a specific tool (pmp s-e).4,5 results the standardization of nicu professionals’ behavior reduces the disparities and promotes a family centred approach to the care of babies and families. the active involvement of parents in the care of their baby during hospitalization facilitates and promotes parental early self-efficacy before discharge, greater self-confidence in their parental skills, and a reduction in the risk of subsequent hospitalizations. relevance to nidcap and conclusion the parents’ involvement template should become a central tool of nicu care for preterm infants, and it supports the implementation of family-centered, nidcap-oriented care. table 1. parents’ involvement template birth date ga at birth birth weight welcoming check in information leaflet locker date first contact parents interaction kangaroo care (kc) duration clothing mirror book breastfeeding promotion not done due to: baby’s clinical condition absent parents parents’ difficulties date kc parents involvement nappy (diaper) changing caregiver caregiver/parent parent abdomen assessment touch stooling caregiver caregiver/parent parent feeding tube bottle breast caregiver caregiver/parent parent hygiene practice sponging bath caregiver caregiver/parent parent special needs babies tracheostomy caregiver caregiver/parent parent gastrostomy caregiver caregiver/parent parent discharge self-efficacy complete self-efficacy incomplete notes parents’ involvement template: a tool to standardize caregivers’ approach to parents in nicu (references on p. 9) 2023 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background about the lebanese crisis developmental care (dc) was established in 2013 at the level iii nicu of the american university of beirut medical center in lebanon through the developmental care and early intervention program (dceip) led by a nidcap certified team of neonatologist and nicu nurses. for the past three years, the provision of dc has been markedly affected by the worst economic and financial crisis amid the covid-19 pandemic followed by the massive beirut blast "beirutshima". this multilayered crisis is endangering the well-being of lebanese citizens including nicu babies, their parents, and their care providers. admitted infants are unable to receive standard care due to a shortage of certain medications and medical supplies and increasing healthcare costs. parents are struggling to pay for transportation to visit and to pay for hospital bills. healthcare providers are working with minimum staffing due to the migration of healthcare workforces. aims to describe the practice of developmental care during the lebanese multidimensional crisis including the covid-19 pandemic at a tertiary healthcare center. findings amid this crisis, the dceip team drafted policies to standardize dc practice. weekly dc observation rounds were maintained, a standardized dc note was embedded in the electronic health record (ehr) and recommendations for dc were shared with nurses and families. infant positioning was monitored daily using the infant position assessment tool (ipat) score on all patients. infants’ positions were supported by "zaky hands" that were generously donated by the nurtured by design following the beirut blast. the team engaged nicu nurses in quality improvement projects and task forces addressing components of dc such as having a daily "quiet time" for at least one hour daily in each nicu pod. mothers and fathers were actively supported in their skin-toskin practice at each opportunity. to sustain the provision of dc in the unit, the dceip team worked on building the capacity of the remaining nicu staff by offering refresher educational sessions and tips on dc. they also organized educational sessions for nicu parents that shifted from in-person to online format for those unable to reach the hospital whether because of covid restrictions or high fuel prices. the parents were satisfied with the individualized sessions which were tailored to fit their needs. a web-based interactive course was developed for the continuous education of nurses and doctors. they liked the content and the pace of the course which was given online and according to their schedule. the dceip team was invited to participate in national online webinars focused on developmental care. all the aforementioned interventions were done at no additional cost. the multilayered lebanese crisis taught us how to adapt and customize individualized interventions for infants, families, and staff without resources. the future plans for the unit nidcap certification and training of a nidcap trainer to establish a training center had to be halted because of financial constraints. relevance to nicdap how to adapt in a low resource and crisis setting. conclusion developmental care becomes even more relevant during a crisis. it tackles all aspects of nurturing care in a humanitarian setting. practice of developmental care during multilayered crisis situation: lessons learned from lebanon doi: 10.14434/do.v16i1.35770masri s, abdel nour g, chayto s, haidar m, saad a, youness n, charafeddine l american university of beirut, lebanon. references: 1. smith vc, hwang ss, dukhovny s, young s, pursley dm. neonatal intensive care unit discharge preparation, family readiness and infant outcomes: connecting the dots. journal of perinatology. 2013, 33, 415–421 2. https://newborn-health-standards.org/wp-content/uploads/2021/07/final-8.7-infantfamily-cdc_parental_involvement-ita.pdf 3. hua w, y weichao; simoni, jm; yan, j, liping j. parental readiness for hospital discharge as a mediator between quality of discharge teaching and parental self-efficacy in parents of preterm infants. journal of clinical nursing. 2020, july;29 (19-20) 3754-3763 4. barnes cr, adamson-macedo en. perceived maternal parenting self-efficacy (pmp s-e) tool: development and validation with mothers of hospitalized preterm neonates. jan research methodology. 2007, 60. 550-560. 5. pedrini l, ferrari c, ghilardi a. psychometric properties of the italian perceived maternal parenting self-efficacy (pmp s-e) journal of clinical psychology in medical settings. 2019, jun;26(2):173-182. (references continued from p. 8) sponsor of the 33rd nidcap trainers meeting 10 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background although exclusive breastfeeding is recommended for the first six months of life, breastfeeding rates in most developed countries are low. sensory over-responsivity (sor) is a neuro-developmental condition characterized by exaggerated behavioral responses to sensory stimuli not typically perceived as irritating, aversive, unpleasant, or painful. sor was found to severely interfere with everyday activities and quality of life, including having an impact on attachment patterns and maternal competencies. sor and its link to breastfeeding-related pain have not yet been examined as potential barriers to exclusive breastfeeding. aims to explore whether mother breastfeeding-related pain, sensory over-responsivity and daily pain sensitivity are associated with non-exclusive breastfeeding six months after birth. methods mothers of full-term infants were recruited two days after birth in a maternity ward. for the assessment of breastfeeding-related pain, mothers completed the visual analogue scale and the short form-mcgill pain questionnaire at enrollment (t1), and at 6 weeks after birth (t2). at 6 months (t3), mothers completed the pain sensitivity questionnaire and the sensory responsiveness questionnaire (srq) assessing sor, provided information about their breastfeeding status, and were then divided into two groups accordingly: exclusive breastfeeding (ebf) and non-exclusive breastfeeding (nebf). results a total of 164 mothers reached the third time point: ebf (n=105), nebf (partial breastfeeding or formula feeding only) (n=59). the incidence of sor was significantly higher among nebf mothers compared to ebf mothers (25.4% vs. 11.4%, respectively, p=.02). moreover, between t1 and t2, 72.3% of the ebf mothers had reported at least 30% pain reduction, compared to 44.8% of the nebf mothers (p=.001). results also revealed positive correlations between breastfeeding-related pain and the srq-aversive score both at t1 (.268<r<.378; .003<p<.028) and t2 (.296<r<.380; .003<p<.024). logistic regression modeling revealed that both breastfeedingrelated pain reduction between t1 and t2 and sor were found to predict nebf at 6 months (p<.001), indicating a 3.2-times (p=.001) and 2.5-times (p=.041) odds ratio for nebf respectively. conclusion sor and sustained breastfeeding-related pain predict nebf 6 months after birth and may emerge as meaningful breastfeeding barriers. our findings highlight the importance of early identification of women with sensory responsiveness challenges for achieving higher exclusive breastfeeding rates. early interventions, including modulation of unpleasant and overwhelming sensory stimulation in the nicu, as well as individualized breastfeeding support tailored to the mother's unique sensory profile, are encouraged. relevance to nidcap breastfeeding rates of premature infants are lower than the who recommendations despite its proven benefits, specifically for this sensitive population. promoting breastfeeding in the nicu is a significant challenge that involves both medical and emotional aspects of the infant, the mother, and their developing relationship. the nidcap approach to care emphasizes the provision of an optimal sensory environment for the developing infant, as well as the support for early mother-infant interactions. increased attentiveness to the mother's sensory experience may be especially important in the context of breastfeeding in the nicu, where mothers might be exposed to unfamiliar, distressing and overloading environmental stimuli. adaptive responses to the mother's sensory needs and environmental adaptation may impact breastfeeding success and as a result increase breastfeeding rates in the nicu and after discharge. breastfeeding-related pain, sensory overresponsivity (sor), and exclusive breastfeeding 6 months after birth: a cohort prospective study doi: 10.14434/do.v16i1.35772freund-azaria a1,2, bart o1, regev r3 and bar-shalita t1 1occupational therapy department, school of health professions, faculty of medicine tel-aviv university, ramat aviv, tel aviv, israel. 2department of neonatology, meir medical center, kfar-saba, israel. 3clalit health organization and neonatal follow-up clinic, meir medical center, kfar-saba, israel. 2023 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 doi: 10.14434/do.v16i1.35773griffiths n1,2, foureur m3, spence k1,4, popat h1,5, hickey l6, sinclair l2 1 grace centre for newborn intensive care, the children’s hospital at westmead, australia, 2 university of technology sydney, 3university of newcastle, 4western sydney university, 5university of sydney, 6butterfly unit, the royal children’s hospital melbourne background nurses’ perceptions of developmental care (dc) practices have been researched globally for almost 30 years. yet, little is known of nurse perceptions of dc in surgical nicus. the stand-alone surgical nicu setting differs from general nicus. infants requiring surgery are often cared for by numerous treating teams, which may lead to a fragmented approach to care. they experience pain, stress, interrupted sleep and separation, with their family often required to travel or transfer between multiple facilities. this research on nurses’ perceptions of developmental care was undertaken in two surgical nicus, one with an embedded nidcap training centre (site a: 23-bed unit), and one with an alternate unit-based model of developmental care education (site b: 40-bed unit). aims • to evaluate nicu nurses’ perceptions and attitudes toward developmental care in surgical nicus. • to explore if the type of developmental care education program provided to nurses influences their perception of developmental care practices in surgical nicus. methods an electronic survey was distributed by email to 276 nurses permanently employed in a surgical nicu at two hospitals in two states of australia. the survey was modified with permission from family and infant neurodevelopmental education (fine) level 2 site assessment document and consisted of 36 questions. content validity was determined by two experienced neonatal nurses and a statistician. descriptive statics were used to examine trends in the responses. data is reported as frequencies and percentages, chi-square, and fisher’s exact test. results one hundred and seventeen (n=117) nurses completed the survey exploring their personal perceptions of developmental care and its application in the surgical nicu. response rates varied; 55% (site a), and 30% (site b) with a combined response rate of 42%. demographics differed between the sites for nurses’ years of experience and post-graduate qualifications. the majority of nurses in each surgical nicu acknowledged the benefits of dc for infant sleep (>93%), improving caregiving (>88%), and reducing infant stress (>90%). the challenge to consistently apply dc practices and the effect on nurses’ workload was similar across both units. the two units differed in the nurses’ perceptions of medical staff collaboration with dc (18% vs. 45%) p=0.006, nurses’ support of dc (47% vs 29%), access to dc education opportunities (55% vs 37%), the inclusion of dc education in organised study days (82% vs 68%), and the inclusion of dc in the orientation of newly employed nurses (81% vs 58%) p=0.021. a greater proportion of nurses at the non-nidcap site indicated that communication with families was difficult depending on the parents’ communication style (74% versus 51%) p=0.028 and was less likely to agree that their nursing peers offered support in the application of dc p=0.039. at both sites as nurses’ levels of dc education increased, they were more likely to agree that dc education was not consistently applied (p=0.032) in the surgical nicu. relevance to nidcap the introduction of nidcap in surgical nicus has been a challenge due to the specific population of newborn infants. various developmental care programs have been implemented as an alternate form of education in these units. these programs can support nidcap work through preparation and an understanding of developmental care principles by healthcare professionals. collaboration between the healthcare team is paramount if nidcap is to be seen as a model of practice in surgical nicus. conclusion: the survey results suggest surgical nicu nurses have a high level of awareness of developmental care and its positive impacts. despite differences between the units’ developmental care education programs, nurses collectively recognised the value of developmental care in reducing stress for infants and supporting families. does developmental care education alter nurses’ perceptions of developmental care practices in surgical neonatal intensive care units? 12 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 european standards of care1 state that infant and family-centred developmental care is defined as a partnership between parents and healthcare professionals. this relationship includes shared responsibility for infant care, collaboration, open information sharing, and joint decision-making. improving healthcare professional skills to support parental involvement during newborn care is highly recommended. aims design an improvement project to: improve the skills of nicu staff to establish a collaborative relationship with parents, support professionals in their relationship with parents, and encourage organizational transformations that facilitate and support the process. methods a multi-professional group (nidcap professionals, psychologist, pedagogue, unit leadership), in collaboration with parents’ representatives, designed the project that included the followings phases: • discussion within multi-professional focus groups on current values and strengths of staff in providing assistance in collaboration with parents (“where do we start from”, “what not to lose along the way”); future goals and organizational changes required to facilitate the process. • un-structured interviews with parents of discharged newborns, conducted by an experienced sociologist, to gather parents’ experiences, needs, and suggestions that could help the staff establish a more effective partnership. • feedback to the staff about the main topics emerged from the focus group discussion and from interviews with parents. scores on the empathic questionnaire,2 before and after project implementation, were used as indicators. results the main topic that emerged from the focus groups was that doctors and nurses shared awareness about the importance of family-centered care; moreover, both shared the value of cooperation and mutual support. poor continuity in family care was identified as a contributing factor to compassion fatigue and misunderstanding between parents and staff, possibly reducing the opportunity for a real partnership with families. twelve parents were interviewed. the need for continuity of care in newborns and family assistance was expressed by all parents, while only some of them would have wanted a more extensive involvement during their baby’s care in critical situations. discussion of the above topics led the staff to create two multi-professional working groups: the first dedicated to the implementation of organizational changes and the second aimed at designing simulation scenarios to be used during educational courses. the first group defined and implemented a primary nurse model; the second organized a simulation training using role-playing with the aim to increase sensitivity and communication skills in the nicu staff. statistically, the empathic median scores were not significantly different before (63 families) and after (27 families) the implementation of the project and reached in both cases the maximum value of six. analyzing the percentage of the maximum score in the items of the domain “parental participation” we observed a trend toward greater satisfaction in the items “we were encouraged to stay close to our child” and “nurses helped us to build the emotional bonding with our son”. relevance to nidcap parents’ involvement in infant care is the highest and most challenging goal of the nidcap approach. this goal can best be achieved by listening to and involving parents not only in baby care, but also in its organization; furthermore, a participatory approach from the staff could improve the implementation of the nidcap approach. conclusions this project starts from both parents’ and staff ’s points of view, under expert supervision. insights within focus groups helped us to reinforce the idea of the importance of individualized care, in a new organizational framework of care continuity. moreover, education by simulation training was organized to increase staff competencies in sensitive communication. references 1. efcni, european standards of care for newborn health 2. latour jm, duivenvoorden hj, hazelzet ja, van goudoever jb. development and validation of a neonatal intensive care parent satisfaction instrument. pediatr crit care med. 2012 sep;13(5):554-9 from parental involvement to a partnership with families in newborn care: an improvement project using the bottom-up approach doi: 10.14434/do.v16i1.35774 simeone n1, bestetti g2, soldati c3, fabbri f1, papa i1, grandi s1, china mc1, lazzari s1, montesi a1, ancora g1 1nicu, infermi hospital, rimini, ausl romagna, italy, 2research institute on health and practice (iris), milan, italy, 3nicu parents'association “la prima coccola, odv”, rimini, italy 2023 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 hasanpour m1, gorgani firozjaee f2, shariat sv3, esmaeilnia shirvani t4, kazemnejad a5 1ph.d. and professor of nursing, nidcap professional, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 2msc of nicn, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 3professor of psychiatry, department of psychiatry, school of medicine, mental health research center, social injury prevention research institute, iran university of medical sciences, tehran, iran. 4associate professor of neonatal-perinatal medicine, department of pediatrics, school of medicine, vali-asr hospital, imam khomeini hospital, tehran university of medical sciences, tehran, iran. 5 professor of biostatistics, school of medical sciences, tarbiat modares university, tehran, iran. doi: 10.14434/do.v16i1.35775 background the main roles of nurses are not only to inform about the disease and treatment of the patient but also to establish an effective therapeutic relationship to address concerns, and provide empathy, comfort, and support. this issue is very prominent in newborn intensive care units (nicus) and doubles the importance of empathetic communication between nurses and parents and promoting empathy skills in nurses working in nicus. aims the aim of this study was to investigate the effect of empathy-enabling programs on nurses' empathy and nurse-parent communication from the perspective of nurses. methods this cluster randomized trial (crt) study was performed with the participation of 64 nurses working in nicus by convenience sampling method. the participants in both groups completed a three-part pre-test questionnaire: a) demographic, b) empathy and c) nurse-parent communication. the intervention was held as online training sessions in the bigbluebutton. the empathy-enabling program was in the form of two-hour interactive lectures on the topic of empathy and empathetic communica tion skills, in addition to videos, video clips, readings, and practicing scenarios. discussions were conducted for the intervention group and the control group did not receive any training. finally, participants in both groups completed the post-tests questionnaires again immediately and one month after the intervention. data were then analyzed using an independent t-test, repeated measures analysis of variance, and pearson correlation coefficient test using spss software version 16. results the results of the independent t-test showed that the mean score of nurse-parent empathy before and immediately after the intervention in the two groups was not statistically significant, but one month after the intervention this difference in the two groups of control (100.96±13.31) and intervention (110.08±15.07) was statistically significant (p = 0.018). also, the results of the analysis of variance with repeated measures did not show a statistically significant difference in the empathy score of the control group during different times, but for the mean nurse-parent empathy score during different times in the intervention group, this difference was significant (p = 0.032). in addition, the results of the independent t-test revealed that the mean score of nurse-parent communication before, immediately and one month after the intervention was not significantly different between the control and intervention groups. also, the results of the analysis of variance with repeated measures during different times did not show a statistically significant difference for the intervention group in terms of nurse-parent communication score. however, the results of the pearson correlation coefficient test showed a significant positive linear relationship between nicu nurses’ empathy scores and nurse-parent communication scores, at three times (p<0.001, r = 0.779). relevance to nidcap the nidcap model of care is one of the current priorities of the neonatal health office in the ministry of health in iran and many other countries that emphasize the increasing presence of parents in nicus and support for them by staff. parents are one of the essential components of the nidcap model and need empathetic communication. conclusion: based on the findings, the importance of teaching empathetic communication and the role of empathy in nurse-parent communication, should be more prominent. as the importance of the presence and support of parents in nicus implementing the nidcap model of care, researchers are recommending the use of practical methods to recognize empathetic communication challenges and teach empathy to nurses despite the coronavirus (covid-19) pandemic crisis and the subsequent possible challenges in nurse-parent communication. also, the authors recommend that empathetic communication skills should be included in formal and informal training programs for nurses and nursing students working in newborn intensive care units. the effect of the empathy enabling program on the nurses’ empathy and nurse-parent communication in the newborn intensive care unit 14 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background/significance it has been optimistically, yet incorrectly, proposed that healthy preterm infants without major complications eventually catch up developmentally to term infants. parental touch, especially during skin-to-skin contact (ssc) has the potential to reduce adverse consequences of prematurity. oxytocin is a neuropeptide that stimulates bonding and parenting behaviors by a bio-behavioral feedback loop. mothers and fathers with increased oxytocin levels have more reciprocity and synchronicity in their interactions with their infants. evidence suggests that neurobiologically, oxytocin directs the young infant to preferentially select species-specific social stimuli to form dyadic attachments. oxytocin is considered critical in the experience-dependent plasticity underpinning auto-regulated functioning in response to experiences during sensitive periods of development. aims the purpose of this research study was to examine salivary oxytocin and cortisol levels related to skin-to-skin contact (ssc) to demonstrate better infant neurobehavioral functioning using the neonatal network neurobehavioral scale (nnns). methods a randomized cross-over design study was conducted in the neonatal intensive care unit (nicu). infant saliva samples for oxytocin and cortisol were collected pre-ssc, 60-min duringssc, and 45-min post-ssc. infant neurobehavioral assessment using nnns was collected prior to hospital discharge. data were analyzed using r version 4,0,3. linear regression models included four predictor variables: salivary oxytocin and cortisol levels after ssc; two measurements for each based on whether the infant was held by the mother or by the father. results a significant inverse relationship was found for infants who were held ssc, with their mothers demonstrating higher oxytocin levels and lower stress summary scores (t= -3.48, p<.003). for these same infants, a significant relationship with higher self-regulatory summary scores (t=2.104, p<.049) was also found. interestingly, infants held ssc by mothers that demonstrated higher cortisol levels also demonstrated higher asymmetrical reflexes summary scores (t=2.413, p<.026). we found that infants held by mothers demonstrating higher cortisol levels (t=2.249, p<.037) also demonstrated similarly high levels with fathers (t=2.156, p<.044) that were also associated with higher infant stress summary scores. there were no significant differences noted between our data and the published normative nnns summary score values identified in figure 1 (lester et al., 2004) for the preterm subset despite mean gestational age (36 1/7) being younger corrected post-menstrual age for participants in the current study at the time of hospital discharge. lester and colleagues reported nnns exams completed at post-menstrual age 42-44 weeks. relevance to nidcap this research explores the bio-behavioral mechanisms that modulate high-risk infants’ behavioral, autonomic, and stress responses utilizing an individualized developmental family-centered care approach. skin-to-skin contact is an evidenced-based holding strategy that increases parental proximity to their infant. this physical proximity allows for a continuously interactive environment that is known to enhance infant physiologic stability and affective closeness between parent and infant. uncovering the neurobiological basis of early parent-infant interaction is an important step in developing therapeutic modalities to increase parent engagement and improve health outcomes. conclusions these findings are an important step in exploring oxytocin as an important biomarker that provides evidence that demonstrates potential improvement in infant neurodevelopmental functioning and competence. the organization of oxytocin availability is critical to the limbic and neocortical systems, and those nervous system structures related to emotion depend on early caregiving experiences. ssc is an intervention that increases oxytocin and decreases cortisol. nurses can use ssc as a strategy to activate oxytocin release to enhance infant neurodevelopmental outcomes. additionally, these findings provide further evidence that neurobehavioral assessments can and should be incorporated into the care of preterm infants to identify an individualized plan of care to support the unique strengths of the infant’s current level of behavioral functioning. statement of financial support the author has no financial relationship with commercial entities to disclose. oxytocin and cortisol release is associated with premature infant neurobehavioral patterns dorothy vittner, phd, rn, faan egan school of nursing and health studies, fairfield university, ct. connecticut children's, hartford, ct doi: 10.14434/do.v16i1.35776 2023 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 acknowledgments this study was supported with funding from the national association of neonatal nurses, american nurses foundation (eastern nursing research society), sigma theta tau international (mu chapter), and the university of connecticut, school of nursing (toner funds). figure 1. neonatal network neurobehavioural scores issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2023. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 16 • 2023 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aims sustained and intense noise exposure in the neonatal intensive care unit (nicu) may be a critical negative influencer on neurodevelopmental outcomes in preterm infants1; often associated with stress responses, alteration in physiological stability, sleep deprivation, autonomic changes, alteration in endocrine and metabolic response, and hearing deficits.2,3 varied strategies including architectural design, special noise-alert or sound-reduction devices, and staff education were reported with inconclusive outcomes.4 nevertheless, the potential influence of music therapy (mt) interventions on noise reduction are missing. this study aimed to evaluate the effect of mt on noise levels in the nicu and to compare the specific effects of individual mt (imt) and environmental mt (emt). methods this case-control study was conducted in a level iii nicu. noise levels were recorded simultaneously from two open bay rooms, one with mt and the other without. each room included a maximum of 10 infants. mt sessions were carried out for approximately 45 minutes with either imt or emt, implemented according to the first sounds: rhythm breath and lullaby (rbl) model.5 noise production data were recorded for 4 hours, on 26 occasions of emt and imt, and analyzed using r software, version 4.0.2. the analysis compared the ambient noise level in the open bay rooms, and the signal-tonoise ratio (snr); a measure that compares the level of signals to background noise. when higher than 0db, the snr can indicate if there was more signal than noise. results overall average equivalent continuous noise level (leq) were lower in the room with mt as compared to the room without mt (53.1 (3.6) vs. 61.4 (4.7) dba, p=0.02, d=2.1 (ci, 0.82, 3.42). imt was associated with lower overall leq levels as compared to emt (51.2 vs. 56.5 dba, p=0.04, d=1.6 (ci, 0.53, 1.97). the lowest sound levels with mt, occurred approximately 60 minutes after the mt started (46 ± 3.9 dba), with a gradual increase during the remaining recording time, but still significantly lower compared to the room without mt. signal to noise ratio (snr) was higher (18.1 vs. 10.3 dba, p=0.01, d=2.8 (ci, 1.3, 3.86)) in the room with mt as compared to the room without mt. relevance to nidcap current strategies most often used to reduce perceptual sound levels are insulation and isolation. these approaches fall short in that they only address reduction of stressors, but do not contribute towards creating a developmentally appropriated auditory stimulation. accordingly, the current study relates to core components of the nidcap model, namely, modulation of stress in the nicu, infants' sensorial experiences and addressing regulation needs of the nicu's physical environment.6 conclusions integrating mt modalities such as imt and emt in an open bay nicu room may help in reduction of noise levels. both mt modalities resulted in higher snr compared to the control group, which may indicate that they are meaningful for the neurodevelopment of these preterm infants. references 1. pineda rg, neil j, dierker d, et al. alterations in brain structure and neurodevelopmental outcome in preterm infants hospitalized in different neonatal intensive care unit environments. journal of pediatrics 2014; 164: 52-60.e2. 2. health c on e. noise: a hazard for the fetus and newborn. pediatrics 1997; 100: 724–727. 3. philbin mk. the sound environments and auditory perceptions of the fetus and preterm newborn. in m filippa, p kuhn, & b westrup (eds), early vocal contact and preterm infant brain development: bridging the gaps between research and practice. 2017; 91–111. 4. casavant sg, bernier k, andrews s, et al. noise in the neonatal intensive care unit: what does the evidence tell us? adv neonatal care; 17, https://journals.lww.com/ advancesinneonatalcare/fulltext/2017/08000/noise_in_the_neonatal_intensive_care_ unit__what.8.aspx (2017). 5. loewy j, stewart k, dassler am, et al. the effects of music therapy on vital signs, feeding, and sleep in premature infants. pediatrics 2013; 131: 902–918. 6. westrup b. newborn individualized developmental care and assessment program (nidcap) family-centered developmentally supportive care. early human development 2007; 83: 443–449. music therapy intervention in an open-bay neonatal intensive care unit room is associated with less noise and higher signals: a case-control study doi: 10.14434/do.v16i1.35777arnon s1,2*, epstein s3, ghetti c4, bauer-rusek s1,2, taitelbaum-swead r5 , yakobson d1,6 1department of neonatology, meir medical center, kfar saba, israel , 2sackler faculty of medicine, tel aviv university, tel aviv, israel, 3school for creative arts therapies, university of haifa, haifa, israel, 4gamut – the grieg academy music therapy research centre, university of bergen, bergen, norway, 5department of communication disorders, ariel university, ariel, israel, 6music therapy department, aalborg university, aalborg, denmark 2023 • developmental observer • 17 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 artículo objetivo maryam fatollahzade, soroor parvizy, mandana kashaki, hamid haghani & mona alinejad-naeini (2020) the effect of gentle human touch during endotracheal suctioning on procedural pain response in preterm infant admitted to neonatal intensive care units: a randomized controlled crossover study, the journal of maternal-fetal & neonatal medicine. doi: 10.1080/14767058.2020.1755649 poco hay de ordinario en un día normal en una ucin. las 24 horas del día, los 7 días de la semana, la tecnología y la biomedicina se combinan con la aplicación experta de otras herramientas de "baja tecnología" y métodos "no tecnológicos". juntos, funcionan: los niños que nacen a partir de las 23 ó 24 semanas sobreviven y se desarrollan. el resultado milagroso se convierte casi en ordinario. pero ¿cómo se producen estos milagros? empecemos con uno de los elementos de la fórmula para hacer milagros: este elemento es el contacto humano. no necesita tecnología. nuestro artículo a revisión es un estudio reciente de fatollahzade1 que se diseñó para averiguar si una intervención denominada gentle human touch (ght) reduciría el dolor durante el procedimiento de aspiración de secreciones, comúnmente necesario para mantener abiertas las vías respiratorias de los niños prematuros intubados. la población del estudio estaba formada por 34 neonatos prematuros (nacidos entre las 27 y las 34 semanas). de forma inteligente, este equipo de investigación utilizó el régimen de cuidados en curso como banco de pruebas, sabiendo que el procedimiento de aspiración, vital para la asistencia respiratoria del neonato intubado, es potencialmente doloroso. el diseño del estudio fue "cruzado”, un enfoque eficaz y estadísticamente potente en el que cada niño se somete a pruebas con y sin la intervención experimental. el orden fue contrabalanceado, lo que significa que la mitad de los niños recibieron la intervención ght durante la aspiración en la primera observación y el tratamiento rutinario (sin intervención) durante la siguiente aspiración cuando se precisó. en la otra mitad de los niños se realizó en orden inverso. la intervención ght se administró a los niños colocados en decúbito prono en una postura ligeramente flexionada. el investigador colocaba una mano alrededor de la cabeza del niño y la otra alrededor de sus nalgas. se proporcionó ght mientras duró el procedimiento de aspiración. utilizando la escala de dolor del niño prematuro (pipp), se realizó una evaluación basal de 15 segundos antes de la aspiración, seguida de una evaluación de 30 segundos después de la aspiración. el pipp proporciona una puntuación numérica del dolor en tres rangos (de leve a grave). se la considera una escala bien validada y utilizada ampliamente en investigación.2 los resultados fueron impresionantes. con el cuidado rutinario, el 85% de los niños mostraron respuestas de dolor moderado al procedimiento de aspiración. el ght redujo la aparición de respuestas de dolor moderado al 65%. las respuestas de dolor intenso se manifestaron en cerca del 9% de los ensayos de control y el ght las redujo a cerca del 3%. estos resultados son un primer paso para añadir el contacto humano suave a la lista de métodos no farmacológicos de tratamiento del dolor en la ucin. muchos de nosotros conocemos los poderes del contacto piel con piel (método canguro),3,4 así como la eficacia del posicionamiento,5-6-8 la lactancia,9 la succión no nutritiva10 y la sacarosa oral11,12 entre muchos otros como métodos para mitigar el dolor. el artículo que comentamos ofrece una nueva contribución. se basa en los conocimientos anteriores sobre el ght y el tacto, abordando de una forma novedosa el abordaje del dolor durante la aspiración; ampliando el alcance de la pipp para su evaluación. queda mucho por aprender sobre el alcance, la magnitud y los resultados inexplorados del uso del ght. aunque es preliminar en varios aspectos, el estudio e fatollahzade et al.1 es elegante, sobre todo, si se considera desde el punto de vista de la ética biomédica básica. es importante señalar que el ght es seguro. no causó ningún daño. al registrarse explícitamente que el procedimiento no causaba ningún daño al niño, se reconocía formalmente una dimensión vital de su método. en otras palabras, aplicaron la conocida máxima "primum non nocere", es decir, "lo primero es no hacer daño". la importancia de hacer doble diligencia the importance of doing dual diligence author – jeff alberts, indiana university, nfi science committee, associate editor for science translator – maria maestro lopez, madrid, spain the original article written in english was published in the developmental observer 2022, vol 15, no 1. doi: 10.14434/do.v16i1.35781 i n t r a n s l a t i o n 18 • 2023 • developmental observer sin embargo, no basta con considerar que algo es ético porque el riesgo es mínimo. existe un imperativo ético que debe examinar si el procedimiento realmente "hace el bien"13... de hecho, fatollahzade y sus colegas lo demostraron, el ght redujo las respuestas al dolor. el suave contacto humano durante la aspiración proporcionó un beneficio real y activo. centrémonos ahora en “no dañar", en el lenguaje de la ética es la no maleficencia [mə-'le-fə-sən(t)s]. el principio de no maleficencia está muy presente en la ética médica. por encima de todo “priemum non nocere”. los niños atendidos en la ucin merecen un compromiso de no maleficencia. todos nuestros pacientes lo merecen. pero, de nuevo, no basta con evitar hacer daño. además, las prácticas éticas exigen que, además, promovamos y hagamos el bien. "hacer el bien" en el lenguaje de la ética es beneficencia [bə-'ne-fə-sən(t)s]. una hermosa palabra para un hermoso principio. mientras que la no maleficencia es principalmente una prohibición del daño; la beneficencia tiene al menos tres formas, cada una de las cuales debemos examinar dentro de nuestra conciencia a la hora de hacer el bien. como tal, la beneficencia incluye (a.) hacer el bien, (b.) prevenir el daño y (c.) eliminar el daño. en la ucin en el momento de enfocar el tratamiento ético de cada niño podemos decir que tenemos una moneda. esta moneda tiene dos caras: la no maleficencia y la beneficencia. las dos caras de una misma moneda son inseparables. debemos mantener la moneda en nuestra mano y hacerla girar continuamente examinando cada cara. esta diligencia obedece a la necesidad de observar ambas caras. por esta razón, estoy a favor de la etiqueta de doble diligencia, que estipula la obligación de respetar ambos principios: la beneficencia y la no maleficencia. abundan los ejemplos ilustrativos de no maleficencia sin beneficencia. ¡basta con ir al developmental observer ¡.14 la dra. ita litmanovitz, neonatóloga y formadora del nidcap, contribuyó con un comentario reflexivo y experto en la columna destinada a la ciencia. ita examinó un estudio con uso importante de tecnología en su diseño.15 en dicho estudio, los recién nacidos extremadamente prematuros fueron monitorizados durante sus primeras 72 horas con una combinación de saturación regional de oxígeno cerebral (crso2 ), mediante espectroscopia cercana al infrarrojo (nirs), eeg de amplitud integrada (aeeg), ecocardiografía funcional (echo), apoyados además por ecografías cerebrales. los autores concluyeron que esta monitorización multimodal "es factible, segura y bien tolerada por los niños extremadamente prematuros en las primeras 72 horas después del nacimiento". cierto, sí, pero ¡recuerda la doble diligencia! el comentario del dr. litmanovitz nos guía a través del conjunto de consideraciones críticas en el océano de datos que se recogieron; por supuesto sin dañar la piel de los recién nacidos ni aumentar los eventos adversos. a pesar del objetivo de los investigadores con el uso las medidas multimodales no se previno la hemorragia intraventricular ni se redujeron los resultados adversos. sin embargo, lo más grave fue que, para realizar estas mediciones, hubo una separación obligatoria de 72 horas entre el niño y la madre. está bien documentado que tales separaciones pueden tener efectos negativos tanto inmediatos como a largo plazo para el niño y su madre. la dra. litmanovitz se refirió a los costes de perder el contacto postnatal temprano entre la madre y su hijo, al tiempo que se buscaba algún beneficio no logrado de cara a prevenir un evento hemorrágico. la concienciación y la atención a la doble diligencia -reconociendo y documentando tanto la no maleficencia como la beneficencia-puede proporcionar la claridad que necesitamos para realizar una atención ética. la doble diligencia no sólo es totalmente compatible con la práctica del nidcap, sino que está integrada en ella. en la prestación de cuidados, en la formulación de protocolos de tratamiento y en la evaluación de la investigación, es imperativo que examinemos tanto el hecho de evitar el daño como el de hacer el bien. la doble diligencia es la base de una práctica guiada por la ética los milagros que ocurren en la ucin que permiten un buen desarrollo de los niños surgen de una combinación de alta tecnología, baja tecnología y no tecnología. no sabemos cómo se combinan para lograr el éxito, pero sí sabemos que todos ellos están implicados, y apuesto a que no es mediante una simple suma de factores separados. cada modalidad apoya a las demás. la alta tecnología médica es crucial. pero también lo es el amor de los padres y el contacto humano. recuerda siempre que un día normal en una ucin se construye desde lo extra-ordinario. “ordinarie” en francés antiguo, hace referencia a una regla ó ordenanza, referidas a las reglas que prescriben las formas de acción, de ella se forma la palabra inglesa ordinary o castellana ordinario. piensa en los protocolos que sigues para hacer un día ordinario. de este modo, todo lo que haces consigue que los milagros sean casi ordinarios. busca y ve la dualidad de la no maleficencia y beneficencia presente en un simple protocolo. en el cuidado del desarrollo, son el núcleo de lo milagroso. references 1. fatollahzade m, parvizy s, kashaki m, haghani h, alinejad-naeini m. (2020) the effect of gentle human touch during endotracheal suctioning on procedural pain response in preterm infant admitted to neonatal intensive care units: a randomized controlled crossover study, the journal of maternal-fetal & neonatal medicine, doi: 10.1080/14767058.2020.1755649 2. stevens bj, gibbins s, yamada j, et al. (2014) the premature infant pain profile-revised (pipp-r): initial validation and feasibility. clinical journal of pain, 30(3):238–243. doi: 10.1097/ajp.0b013e3182906aed 3. mosayebi z, javidpour m, rahmati m, et al. (2014) the effect of kangaroo mother care on pain from heel lance in preterm newborns admitted to neonatal intensive care unit: a crossover randomized clinical trial. journal of comprehensive pediatrics, 5(4):1–6. doi : 10.17795/compreped-22214 4. johnston c, campbell-yeo m, disher t, benoit b, fernandes a, steiner d, inglis d, zee, r. (2017) skin-to-skin care for procedural pain in neonates, cochrane database systematic reviews, 2 (2): cd008435. doi: 10.1002/14651858. (continued on p. 31) 2023 • developmental observer • 19 n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e edmonton nidcap training centre, canada our neonatal program in edmonton, ab, canada began its journey in 1996 when dr. juzer tyebkhan first learned about nidcap. his interest and desire to bring this knowledge to our edmonton neonatal units led to nidcap training and education for a small group of physicians and staff starting with jean cole as trainer in 1998. obtaining a grant for a randomized control trial of nidcap in edmonton followed and the original edmonton nidcap team completed the study in 2004. it was subsequently published in 2009.1 this series of events was the start of bringing nidcap to edmonton and making it a standard of care in our five neonatal units across the city, which continues to the present day: stollery children’s hospital sites: • philip c. etches nicu at the royal alexandra hospital (level 2/level 3) • david schiff nicu at university of alberta hospital site (surgical/cardiac) • sturgeon community hospital (level 2) covenant health sites: • grey nuns (level 2) • misericordia (level 2) while the group membership has changed over the years, juzer became the first canadian trainer-in-training (or “tint” as it was so fondly named) with dr. joy browne as nidcap trainer and apib trainer, and dr. deborah buehler as apib trainer. over the next several years, a total of twelve edmonton professionals would complete their nidcap training under their expertise and mentorship. once juzer achieved nidcap trainer, he carried on with all training for nidcap in edmonton. today edmonton has seven active nidcap professionals, including juzer, who is also an apib professional. in 2017, we were honored to host over 100 nfi members for the annual nidcap trainers meeting and about 100 additional edmonton-based professionals for our open scientific forum of nidcap. during the meeting, we officially opened the edmonton nidcap training centre canada, or entcc. we are so thankful that we had the opportunity for dr. heidelise als to cut the ribbon and that we were able to celebrate the momentous occasion twenty-one years in the making with so many of the nfi family present with us in our city. of course, we must mention that none of this would have been possible without the hard work and dedication of many people over the years. andrea nykipilo and juzer tyebkhan, co-directors, entcc nidcap team doi: 10.14434/do.v16i1.35778 20 • 2023 • developmental observer so, you might be wondering, what have we been up to since then? as for most people across the world, the past three years have challenged the edmonton nidcap team, but as we say in the world of development – the pathway continues because adaptive strategies arise to overcome hurdles. entcc has navigated the challenges and looks ahead to the next steps of developmental progress. entcc’s goals remain: • education and nidcap training • care and advocacy for babies, families, and our neonatal professionals • furthering the scholarship of developmental care education and nidcap training we believe that the cornerstone to ensuring that nidcap remains a standard of care in all units in edmonton is a foundational training for staff. in 2018, we began to instruct the fine (family and infant neurodevelopmental education) program as the entry to nidcap education. many interdisciplinary participants from across canada have now attended the fine level 1 workshops at entcc. this allowed us to bring education and understanding of nidcap training to hundreds of people throughout 2018 and 2019. as well, a small number of edmonton staff are currently taking fine level 2. a workshop was held in mumbai, india in november 2021 attended by 13 professionals from five cities. we are working with our colleagues in the nicus in india to further this international training collaboration. slowly, as gathering restrictions have eased, we have started offering the training in edmonton once again in 2022. as nidcap trainer for entcc, juzer continues to do nidcap training for new trainees. we hope to see our foundational education lead to future nidcap training opportunities across canada and elsewhere. in addition, we are looking to the future with an innovative mindset by collaborating with academic technologies at the university of alberta to create a platform of online resources for nidcap. we continue to create and collect material for future video-based learning of infant neurobehaviour. one main lesson that we learned during the pandemic pivot was that nicu professionals want education that is accessible virtually. we believe that this should not take the place of in-person, relationship-based educational components, and hands-on practice, but online, multi-modal education can augment and enhance our teaching and help us meet the needs of contemporary learners who come to entcc for training. we are excited to see what the future holds in this area! advocacy, working with patients and families despite challenges in the healthcare system in alberta in recent years and the stress experienced by families and staff related to the pandemic, members of the nidcap team have continued to provide care and support to babies and families by doing observations, providing care plans, and advocating for their optimal development. one way that we have done this is through nidcap rounds. team members at both the david schiff and the philip c. etches sites round at least one to two times monthly to meet with families and provide on-thespot, real-time developmental guidance in conjunction with observation and support for the infant. this also provides an opportunity for in-the-moment staff education, and it is our goal in the future to expand this offering to other units to reach more babies, families, and staff. as always, the edmonton nidcap team continues to play an important role in ensuring that the voices of the baby and family are heard and as such, there is a representative from the team on most nicu committees and working groups, from feeding to lung health to quality improvement. we ensure that the developmental needs of the infants are always kept at the top of the agenda. heidelise als officially opening the edmonton nidcap training centre the nidcap trainers meeting in 2017 2023 • developmental observer • 21 scholarship of developmental care over the years, entcc team members have remained active nidcap community members and participants at the annual nidcap trainers meetings by presenting abstracts and journal club entries, in addition to facilitating small group discussions. we continue to contribute to research through a developmental lens and participate in quality improvement projects. in 2020, members of the team based out of the david schiff nicu surgical/cardiac unit published2 a paper about a quality improvement project in the surgical/cardiac population entitled implementing a skin-to-skin care and parent touch initiative in a tertiary cardiac and surgical neonatal intensive care unit, contributing to the knowledge base around this population. in conclusion, entcc looks forward to 2023 as the start of a new year helping babies and families advance on their pathways of optimal development. we intend to hold more educational workshops and expand online educational resources and we hope to re-energise formal nidcap and apib training now that restrictions on travel are fading away. entcc and its activities continue to be supported by the stollery children’s hospital foundation. we thank them for naming nidcap a “pillar of excellence” and remain grateful for the ongoing trust and confidence in nidcap and the entcc in providing the best possible outcomes for babies in our care. references 1. peters kl, rosychuk rj, hendson l, coté jj, mcpherson c, tyebkhan jm. (2009). improvement of shortand long-term outcomes for very low birth weight infants: edmonton nidcap trial. pediatrics, 124(4), 1009–1020. https://doi.org/10.1542/ peds.2008-3808 2. levesque v, johnson k, mckenzie a, nykipilo a, taylor b, joynt c. (2020). implementing a skin-to-skin care and parent touch initiative in a tertiary cardiac and surgical neonatal intensive care unit. advances in neonatal care, june 24, 2020 volume publish ahead of print issue -lhttps://doi.org/10.1097/anc.0000000000000770 teaching fine crystal and julia on developmental rounds mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 22 • 2023 • developmental observer kia ora! (hello) from new zealand look closely and you will find our small island country at the bottom of any world map, just below australia in the southwestern pacific ocean. in size, new zealand has slightly less area than the state of colorado in the united states and a little more area than the united kingdom. about two-thirds of the land is economically useful, while the remainder is mountainous. because of its numerous harbours and fjords, the country has an extremely long coastline relative to its area. new zealand is populated by just over five million people. our indigenous people, māori, make up 17% of the national population. their culture is a big part of new zealand’s identity, so respecting, preserving, and promoting māori culture is a vital cornerstone of our country’s healthcare values. we consistently provide, as a team, quality holistic care with respect for family/whānau, encompassing the concepts of te whare tapa whā (the four cornerstones of health), te taha wairua (spiritual), te taha tinana (physical), te taha whānau (family), te taha hinengaro (emotional and psychological) in accordance with te tiriti o waitangi (the treaty of waitangi). in tune with the goals of developmental care, promoting and fostering healthy interpersonal relationships between nga mātua/parents, family/whanau, and baby/pēpi is central to neonatal care delivery in new zealand. the new zealand healthcare system is best classified as a variation on the beveridge model (tax financed healthcare provided by the government) and tends to exhibit outcomes comparable with other developed democracies. this year healthcare delivery in new zealand is undergoing major reform. the local district health boards are being replaced by one national organisation called te whatu ora health nz. a new māori health authority has the power to commission health services and monitors the state of māori health. a range of neonatal care is delivered in a total of 23 different localities across new zealand. six centres are dedicated neonatal intensive care units (nicu) where tertiary care for preterm babies born from 23 weeks gestation onward is provided. these nicus are in the major cities of auckland, hamilton, wellington, christchurch, and dunedin, from north to south. auckland is new zealand’s largest and most populated city with over 1.7 million people and is considered the most cosmopolitan city in the country with ethnic groups from all around the world, including a high proportion of people from pacific islands and asian countries. consequently, with the number of ethnic groups and an excellent climate to grow food, there exists the most amazing cuisine and cultural diversity. nidcap in new zealand the concept of developmental care was first introduced in new zealand by dr. heidelise als. doctors and nurses were impressed by the positive outcomes reported in early studies by als, in particular the development of the synactive theory in the mid-1980s and from this theory the implementation of the newborn individualised developmental care and assessment program (nidcap).1,2,3 dr. als was invited to visit an auckland nicu in the mid 1990’s where she presented her findings. today, 20 years later, a wide range of developmental care interventions are now embedded as part of everyday care skin-to-skin care im ag e us ed w ith p er m is si on global perspective on developmental care new zealand: a nursing reflection dale garton, rn, mn1 lauren kendrick, rn, mn, gradcert nic2 1 nurse unit manager, neonatal intensive care unit, starship child health, auckland, new zealand 2nurse educator and neonatal paper coordinator, neonatal intensive care unit, starship child health, auckland university of technology, new zealand doi: 10.14434/do.v16i1.35780 2023 • developmental observer • 23 in every neonatal unit in new zealand. much of the success of developmental care integration has been due to the passion and persistence of neonatal nurses leading the way in advocating for whanau and pēpi in their care. neonatal teams, in particular nurses, began to question their contribution to the outcomes of pēpi and whānau in their care. how did the care delivered complement the medical and technical advances in neonatal care? nurses, partnering with parents, were uniquely placed to establish cultural change within units. this partnership was integral to family-centred care becoming the success it is today. developmental care had a natural affinity with the nursing concept of caring making it a philosophy that should have been easily embraced by the nursing team.4 in the early days, however, practicing developmental care seemed outside the nicu medical model and was considered by some as an ‘add-on’ to care once the technical and medical tasks had been addressed.5 as developmental care initiatives began to be introduced, these initiatives received little acknowledgment from the wider team as contributing to pēpi or whanau outcomes. the science was relatively new about how the growing brain could be so influenced by the way neonatal care was delivered. additionally, the inability of nurses to articulate their contribution to longterm outcomes suggested a similar conclusion.6 nicu environments were changing, with lower lights and less noise being advocated for by staff. care was also being modified, changing from regimented two and four-hour nursing care handling times to ‘cue based’ or ‘cluster cares’, depending largely on the cultural norms of the unit. it was clear further education and knowledge were required to support the implementation of developmental care strategies and to have stakeholder investment. as new zealand was so far away from many of the research sites, experts, and nidcap training sites this proved to be a challenge. fortunately, the neonatal nurses college aotearoa (nnca), the professional body within the new zealand nurses organisation (nzno) which represents neonatal nurses, stepped up to become strong ambassadors of supporting developmental care practices by providing nursing education opportunities. it is well recognised that understanding the ‘why’ behind developmental care practices is key to influencing and infiltrating evidence-based best practices in neonatal care delivery. through funding, nnca was able to support dr. joy browne, nidcap master trainer, on several occasions to come to new zealand to provide developmental care workshops. dr. browne returned to new zealand recently as a keynote speaker along with dr. heidelise als at the nnca-hosted coinn conference in auckland in 2019. many nurses unable to attend the international conference were able to instead attend full-day programs provided by dr. browne in christchurch, hamilton, auckland, and whangarei. in 2014, inga warren, senior nidcap trainer and co-director of fine international presented the family and infant neurodevelopmental education (fine) level 1 at the auckland starship nicu. a group of five nurses and allied health team members went on to complete the fine level 2 course during the same visit. this program provided ‘steppingstones’ towards implementing nidcap and has been instrumental in providing a road map for fully integrating developmental care practices. new zealand is now working closely with australia, accessing fine training through the australasian nidcap family support planning care swaddled bathing im ag es u se d w ith p er m is si on 24 • 2023 • developmental observer training centre, grace centre for newborn intensive care, the children’s hospital at westmead in sydney. from this centre, nidcap trainer nadine griffiths and nidcap professional associate professor kaye spence have been integral in facilitating and conducting fine training for the neonatal teams in new zealand. with some fortuitous funding and collaboration between three tertiary units, one in the north island (auckland, starship) and two in the south island (christchurch and dunedin), plans were made to host three fine 1 courses. this would be the first time a large cohort of more than 60 neonatal nurses would access fine training which, in turn, would certainly strengthen best practices across the three sites. unfortunately, this wasn’t to be because in march 2020 a global pandemic took hold and diverted all plans as healthcare facilities shifted into emergency planning unlike any ever experienced before. after a delay of two years, in may 2022 three seminars for fine 1 were provided online rather than face-to-face. over 40 neonatal team members from four sites in metro auckland and northland attended two workshops while dunedin hosted another program for local team members. online training meant that geographical distance was no longer a barrier to excellent education, and opportunities increased. impact of developmental care education and training across new zealand the nicu in dunedin introduced family integrated care (ficare) as their care model in november 2018 following involvement as an intervention unit of an international study comparing ficare with standard nicu care. christchurch was to follow, and in 2021 auckland starship nicu adopted this program as well. while it must be recognised that ficare is not a developmental care model, it does support the systems in a hospital setting that, in turn, support developmental care strategies ensuring the parent role is integral in the care of their baby. in the wellington nicu, developmental care is supported by an excellent suite of pamphlets that share information with parents about how they can respond to their babies’ needs at different gestational ages. the waikato nicu has a developmental care team comprised of senior rns and members of the multidisciplinary team who report significant changes in the past five years. their initiatives include a “positioning series” poster for developmentally supportive positioning for staff education. positioning aids are available, although they report many nurses still prefer to make their own ‘deep nest’ using rolled towels and linen. the waikato nursing team has found even the simplest ideas work, such as using phototherapy devices which facilitate containment and allow kangaroo care, cuddles, and breastfeeding without interrupting the delivery of the phototherapy. they have introduced quiet time, every day at 1400 hours when lights are dimmed, and parents are encouraged to provide skin-to-skin holding. further north at both tertiary nicus in auckland, nursing and allied health teams introduced developmental care rounds. teams involved report this activity as being an excellent way to engage and encourage nurses by sharing knowledge and mentoring good practice. parents also benefit, as with the team’s guidance they learn how to read the behaviour of their baby and articulate their observations back to the healthcare team on ward rounds. the auckland starship nicu introduced the infant and family-centered developmental care (ifcdc) standards (https://nicudesign.nd.edu/nicu-care-standards/). while this is a work in progress, it is envisaged that each standard will be accompanied by a multimedia education segment and video to help translate the standards from theory to practice at this site. the team has also enjoyed the opportunity, and experienced collegiality and networking by attending the annual gravens conference on the environment of care for high-risk newborns held each year in florida. this is quite a journey from new zealand, but certainly worth the effort as it maintains the enthusiasm of the passionate staff who continue to pursue what is best for babies in the nicu environment. in summary, over the past 20 years developmental care strategies have been successfully introduced to all neonatal centres in new zealand, although practice variation remains at different hospital sites. with ongoing support from organisations (e.g., nnca), interest from consumer groups (e.g., the little miracles trust nicu parent peer-to-peer support group), and training from fine 1 and 2 and potentially nidcap easily accessible through the australasian nidcap training centre, the road map to ensure developmental care is fully integrated into neonatal care nationally is well on its way to achieving the best outcomes for pēpi and whanau entrusted in our care. references 1. als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of neurobehavioral development of premature infants and their parents in the environment of the nicu. physical & occupational therapy in pediatrics. 1986, 6(3-4):3-53. doi:10.1002/1097-0355(198224)3:4<229::aidimhj2280030405>3.0.co;2-h. 2. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology. 1997, 21(3):178-189. doi.org/10.1016/s0146-0005(97)80062-6 3. als h, lawhorn g, duffy, fh, mcnulty g, gibes-grossman r, blickman jg. individualized developmental care for the very low birth weight preterm infant: medical and neurofunctional effects. the journal of the american medical association. 1994, 272(11):853-858. pmid: 8078162. 4. aita m, snider l. the art of developmental care in the nicu: a concept analysis. journal of advanced nursing. 2002, 41(3):223-232.  doi.org/10.1046/j.1365-2648.2003.02526.x. 5. byers jf. components of developmental care and the evidence for their use in the nicu. the american journal of maternal child nursing. 2003, 28(3):174-180. doi: 10.1097/00005721-200305000-00007. 6. turrill s. a focus of care for neonatal nursing: the relationship between neonatal nursing practice and outcomes. part 2. (research). paediatric nursing. 2003, 15(5). doi:10.7748/ paed.15.4.13.s19. 2023 • developmental observer • 25 n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 dear heidi, you wouldn’t believe the trip dorothy and i had to get to the meeting. we flew from newark, new jersey to copenhagen, denmark to riga, latvia, and then to stuttgart, germany. it’s so amazing that we are coming together in person after three years because of the pandemic. i’ve been so looking forward to reconnecting with everyone and renewing relationships, and yet, my joy and anticipation are caught and held back by the undeniable absence of you, heidi, our esteemed leader in all things nfi. there has been an exhausting effort by so many, especially those here in your native country to ensure a productive and successful meeting, to move forward as best as possible without you, fulfilling the mission of the nfi, and honoring all that is your legacy. deborah formally dedicated this meeting and our work here to you. as we were easing back into our in-person format this year, we have managed a hybrid format, which is pretty cool. we have 94 attendees in person plus 54 online for a total of 148 participants from 27 different countries. unusually this year, we began with the one-day open symposium looking at nidcap on the individual, the family, and the political level. our german hosts had planned well to create a comfortable and aesthetically pleasing environment. believe it or not, we are in a beautiful glass building of wala which researches and develops medicinal and cosmetic products. omg heidi, i thought i saw you at breakfast this morning, wishful thinking can be so powerful. in thinking about nidcap on the individual level, oskar jenni presented much optimism in terms of improvement of long-term outcomes due to the plasticity of the preterm brain in response to environmental stimuli. it was also a refreshing review of basic brain development. through ingeborg krägeloh-mann we were able to turn our attention to the various degrees of injury effects in light of the brain’s plasticity with fascinating examples correlating brain imaging to longterm effects. jacques sizun then really got us thinking about how to translate brain development research into practice. heidi, i couldn’t help remembering the infamous slide jacques showed so long ago with the suggestion that nidcap was the new magic tonic being sold in the old west of the united states. so many of us have grown so much in our understanding of this work and jacques has been such a strong advocate on such a national level for nidcap. unfortunately, professor brisch was unable to join us so we missed the twenty-year outcome presentation. dorothy vittner and i filled in with our approach toward nidcap enhancing the family experience. as usual, dorothy managed to get not only a quote from our dear friend john chappel but also a photo of cathy daguio. even though many people might not have known them as key nfi members who have died. maybe you have seen them heidi, i hope so. while attending nidcap on a family level we were all quite impressed with dominique haumont’s success in getting nidcap on a national level and she reminded us that you told her “the object is not to forget, but to remember to go on”. that was a lot easier when you were physically present with us heidi, but we will do our best. remember kelly jannsens reflections on the 33rd annual nidcap trainers meeting, bad boll, germany doi: 10.14434/do.v16i1.35779gretchen lawhon nfi president deborah buehler, phd “so many of us have grown so much in our understanding of this work” 26 • 2023 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 from leuven? she told us of their amazing journey in getting nidcap on to political agendas through the development of personal relationships. and, as you know heidi, we could not discuss nidcap, families, and a political agenda while in germany, especially without having silke mader share her passion and advocacy for this topic. honestly, i totally admire silke’s energy and zeal, but i feel inadequate in her estimation. we know political work is critical, but i am totally occupied with my clinical work. silke continues to be the most powerful family advocate i know. our one-day open symposium ended in a very fitting manner with a presentation by a family sharing their journey with their son mattis in newborn intensive care four years ago. they were very effective in communicating important messages to all of us. friday evening, we all turned our attention to you heidi. first i went on a tour of the wala medicinal herb garden. gloria mcanulty reminded me that it would be a good connection with you because of your son christopher and the camphill philosophy. then there was a wonderful experience created so that prior to dinner we had the opportunity to walk a candle-lit path with inspirational messages you had given to many of us. in fact, fifty nfi members shared how you inspired each of them. it was a beautiful evening; the moon had risen, and it was a quiet meditative atmosphere. i will admit that for several of us, we actively grieved. i hope you felt the huge outpouring of love from all of us. as our dinner was finishing up, deborah buehler gifted us with one of her wonderful slide show retrospectives of your life which ended on a positive note of your love for dancing, which was next on our agenda. good morning, heidi, it’s me gretchen, still in germany, without you. after what nearly everyone felt was a very successful day we then launched into our routine of accomplishments and overview of training. kaye spence and stina klemming did a really innovative approach by creating a video of each center’s report, both visually and in the representative’s own voice. i thought this method was fantastic! of course, you and frank were included in the national nidcap training center’s report and, by the way, the board approved sam butler as a nidcap trainer. she will do an excellent job as center director having learned everything from you, our best mentor. we continued our meeting with the quality assurance advisory council session on nurturing nidcap trainers with small group work sessions. thankfully graciela basso has agreed to continue as chair of the qaac. as usual, we had quite a few thought-provoking abstracts presented both in person and through zoom. you would love to know the new directions that nadine griffiths and natascia simone are taking with nurses’ perceptions as well as parental partnerships. we had a good section on breastfeeding and oxytocin from adi freund-azaria in israel and dorothy vittner’s ongoing work. additionally, we had good and interesting presentations on music therapy and on the quality of sleep. this morning both marzieh hasanpour, in person, and saadieh masri, on zoom, were able to present their work on empathy and developmental care in lebanon, respectively. our journal club continues and this year we had three articles including maternal bonding through therapeutic cooling, a small wins framework, and severe bpd. heidi, it was another very full day and then our hosts took us all to tübingen for a wondrous evening filled with a punting boat ride, an old city walking tour, and an incredible dining experience. the boats were like authentic primitive swan boats at boston public garden, and there were swans in the canal! i got the best captain; captain jonas and he even sat and played a jazz song on his guitar for us. i have to admit heidi, that the city walk was quite challenging for me, but so interesting and a perfect the 2022 trainers meeting was a hybrid with 94 attendees in person, and an additional 54 attending online 2023 • developmental observer • 27 n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 experience of the town. i can certainly see why you so enjoyed all the time spent training here. i ended up with a bit of a private tour with christian poets. the restaurant was just amazing, and we had a wonderful time with memories to last forever. so, heidi, this is our third day, and everyone is tired and we have the important work of the nidcap nursery program as well as the nfi membership meeting. you would have been so proud of sam butler for her presentation on using the nnp as a systems change agent tool. our nfi membership meeting had many of the usual tensions; some questions about the budget that just needed clarification. of course, whenever someone does not get elected, it is a little difficult because we want everyone to be satisfied. then, although it had just been an undercurrent, the tensions between fine and nidcap pulled us underwater a bit. with all our excellent clinicians and nfi members, surely, we can figure this out. if you can send us any good vibrations, please do, heidi. the best part of having a hybrid meeting was having some of our old friends such as elsa sell and roger sheldon join us. we had bjorn westrup with us on zoom throughout the meeting and at one point, he was walking his dog as he chimed in on an issue. heidi, all in all, this was an excellent although emotionally painful meeting for many of us. thank you for all you have given us. your loving friend, gretchen. some of the 54 remote attendees supporting hands nidcap care in the moment 28 • 2023 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 some participants' comments on the 33rd nidcap trainers meeting what were the most rewarding experiences for you at the meeting? what would you like to see more of at the nidcap trainers meetings? » the open day sessions were very interesting. the small group discussion and reflection were the more rewarding parts: and after so long time » talking in person with people » informal discussions with other trainers on how they do things » the venue was good, and the audiovisual team was fantastic » catching up with everyone, meeting new members, discussing research ideas » the excursions were excellent even though long and tiring any other considerations? » could we have a full 3rd day. it was a pity that many left before the meeting finished » cost is the main issue. » the hybrid format must continue, even though this may cost something re tech support. online attendance allows so many more to join » the membership meeting should not be on the last day so that follow-up conversations can occur more privately and also will allow members to think about what was presented » the venue needs to be easily accessible from the international airport » more research and group discussion/ share experiences » more practical support for professionals and trainers » more group sessions with discussion » more scientific presentations » more interaction between the members and the members of the board nfi members get a 10% discount. fee $99 aud, ($71 usd, euro 63 approx.) the link for first steps fine elearning is https://schp.org.au/fineaustralia a new e-learning program for developmental care endorsed by the nfi as foundations of nidcap education. advertisement 2023 • developmental observer • 29 m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 kelly janssens is a nurse-midwife and lactation consultant (lc), in the uz (university hospital) leuven neonatal intensive care unit (nicu), and nidcap-trainer at the nidcap training center uz leuven. she works part-time as a project coordinator for the belgian federal public service (fps) with expertise in breastfeeding and developmental care. in her remaining time, she is pursuing a midwife specialist degree at the ku (catholic university) leuven. how did infant and family-centered developmental care ‘come to life’ on the political agenda? an overview of key events that led to a structural approach to supporting developmental care in belgium. how it all started today the belgian federal public service (fps) supports neonatal units and their medical staff (both nursing and medical), to be trained in breastfeeding and developmental care programs such as nidcap and family and infant neurodevelopmental education (fine). the ultimate goal is to provide (preterm) newborn babies with the best possible start in life. this investment strategy did not however develop overnight. following the who and unicef’s global recommendations, the fps started to subsidize breastfeeding education programs after a law was passed in 1999 to establish a federal breastfeeding committee. to this day the breastfeeding coordination core group is entrusted with the task to promote, protect and support breastfeeding. its members, with a medical and nursing background, are approved by royal decree. apart from providing advice regarding breastfeeding policy measures, another of the members’ tasks is to monitor the baby friendly hospital initiative (bfhi) in hospitals. for the latter function two bfhi-coordinators were assigned in 2005. how the project expanded with developmental care in 2012, neonatologists prof. dominique haumont of the brussels nidcap training center and dr. anne clercx working at the fps, highlighted the importance of qualitative developmental care in neonatology to the policy makers. as a result, in 2013 a developmental care coordination team was formed in parallel with the breastfeeding coaching team. over and above helping teams evaluate developmental care practices in their neonatal units, the goal was to establish and ensure quality care for preterm born babies by additionally incentivizing training in nidcap and fine. after financially supporting the french speaking brussels nidcap training center, the fps chose to subsidize the designation of a flemish counterpart. the uz leuven nidcap training center was officially opened on the 7th of may this year. the belgian prime minister, alexander de croo, and the minister of social affairs and public health, frank vandenbroucke, were invited to give an introductory welcome speech at the symposium. in preparation of this visit, both ministers gained detailed information on both projects and were enlightened about the latest evidence on breastfeeding and developmental care. additional projects unfortunately put on hold, during the corona pandemic, such as the establishment of a donor human milk bank, were brought back to the table to ensure the continued commitment to the overall goal: improving the development for preterm born babies. future with 30 maternity wards certified with a bfhi-label (out of the 93 established maternity wards in belgium), and 16 (out of 19) belgian nicus involved in a nidcap-process, the fps is continually working on strategies to anchor breastfeeding and developmental care projects into a solid national care program for mothers and their newborn babies. one such strategy involves the endorsement of revised qualification standards for maternity and neonatology wards, requiring obligatory staff training in breastfeeding and developmental care. how can healthcare professionals influence the political agenda to improve newborn care? translation into practice doi: 10.14434/do.v16i1.35782kelly janssens kelly janssens 30 • 2023 • developmental observer a lthough neonatology is a technologically sophisticated medical field, its insights are too frequently slighted by parents, medical staff, and psychosocial support personnel. even today, neonatology lacks any kind of psychological specialisation, which has, for example, been a core component of paediatric oncology for many years. developing new modes of sensitive, individualized, attachment-based nursing, helping parents to bond with their baby born very preterm, implementing kangarooing for mothers and fathers, and 24/7 visiting hours should lead to a specialisation on psychological and trauma-related issues. furthermore, the medical and nursing staff should receive regular supervision as part of psychohygiene in order to foster sensitivity for the infants’ and parents’ needs, and to facilitate an attachment-based friendly atmosphere in the nicu. all this should focus on fostering secure infant-parent attachment development, despite the difficulties resulting from preterm delivery, complex newborn intensive care, and familial complications. our ulm study, which started about 20 years ago,1 was one of the first intervention studies, in which we focused on enhancing the development of attachment security in the preterm infant by supporting the parents through individual support, parent groups, and support during the transition from hospital to home. one aim was to mitigate previous unresolved issues of loss and trauma, as many parents had already experienced a stillbirth before they had to cope with a preterm delivery. we found that if the trauma of a previous loss has not been resolved, preterm birth triggers several trauma-related symptoms like avoidance of the baby, overanxiety, inability to psycho-neonatology: working with parents, preterm infants, and staff. the outcome of former preterm infants 20 years later doi: 10.14434/do.v16i1.35783 karl heinz brisch1, carmen walter2 1specialist in child and adolescent psychiatry, private medical school paracelsus salzburg, institute for early life care, salzburg, austria, and children’s hospital dr von hauner, department paediatric psychosomatic medicine and psychotherapy, university of munich, germany, 2specialist in education, formerly research assistant at the children’s hospital dr von hauner, department paediatric psychosomatic medicine and psychotherapy, university of munich, germany. carmen is a co-researcher with karl heinz brisch. karl heinz brisch reflection an important facilitator of bringing developmental care to the spotlight, was the publication of a report in march this year of the belgian health care knowledge center (kce)* on infant and family-centred developmental care (ifcdc) for preterm newborns. in the comprehensive report, the authors suggested recommendations for the implementation of ifcdc-principles to the fps, the minister and hospital boards. a group of experts (neonatologists and specialized nursing staff in neonatology) underlined the importance of these proposals. this collaboration between experts from the working field together with evidence from the literature, convinced policy makers of the necessity to establish a course of action and to continue the support of developmental care in neonatal settings. the opening ceremony of the nidcap training center in uz leuven, was the perfect opportunity to invite our ministers to the nicu to meet the parents of our vulnerable babies as well as the nursing staff personally, and to discuss why ifcdc is so important to sustain. the combination of the scientific report on ifcdc and the opening of the training center created momentum for current policy makers to finalize decisions that will result in the consolidation of both projects. we hope this will build a strong foundation on which to build, and to enhance chances for a better future of preterm born babies in belgium. references * detollenaere j, benahmed n, costa e, christiaens w, devos c, van den heede k. infant and family-centred developmental care for preterm newborns in neonatal care. health services research (hsr) brussels: belgian health care knowledge centre (kce). 2022. kce reports 350. d/2022/10.273/09. this document is available on the website of the belgian health care knowledge centre. https://kce.fgov.be/en m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 2023 • developmental observer • 31 m e e t t h e p r e s e n t e r s — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 separate from the baby, and leaving the infant in the incubator for an extended period of time. unprocessed mourning of a previous stillbirth impeded the parental bonding process with the preterm baby. we further found out that in the control group – without any attachment-based intervention – healthy preterm infants had a greater chance of developing a secure attachment to their mothers, while neurologically impaired infants were more likely to develop insecure attachment. on the other hand, in the intervention group, infants had eight times (or 7.8) higher chance to develop a secure attachment to their mothers, even when they had neurological problems, which implies that their health status no longer predicted their attachment development. we followed this sample of very low-weight preterm infants (all <1,500 g birthweight; the infant with the lowest birthweight at that time in our sample that survived weighed only 320 g!) for 20 years and have collected data at several age points during their lives. the latest data sampling point for these formerly preterm infants occurred at about 20 years and included their mothers. to the best of our knowledge, ours is the first to investigate into late adolescence the longterm attachment development of teenagers born very preterm. we conducted a semi-structured interview that focused on attachment development with respect to their family and to their peers. in adolescence, peers are very important for emotional security and for the separation process from the core family. the most striking result was that the attachment status of 56% of former very preterm adolescents changed over time. more precisely, a shift was found from attachment security in early childhood (assessed 14 months postpartum, corrected for prematurity) toward insecurity, resulting in a high proportion of insecure-avoidant (36.9%) and to some extent disorganised attachment classifications (21.5%).2,3 however, attachment was unrelated to neonatal parameters, neurobiological risk, or intelligence. furthermore, in late adolescence, there was an association between psychological distress and behavioural problems in teenagers born very preterm, especially according to those symptoms classified as "preterm behavioural phenotype". these subjects had to be referred to psychotherapy.4 in summary, our results reveal that psychological burdens in late adolescence do not primarily arise from the physiological consequences of preterm delivery per se, but rather from feelings of loneliness and isolation, resulting, for example, from having people around, missing close friends, or non-participation in age-appropriate peer groups. our findings stress the urgent need to integrate psychosocial attachment-based support for the babies, parents, and staff as a baseline requirement from the very beginning. promoting attachment security by internalising representations of trust, reliable emotional support in times of need, and dampening the adverse effects of parenting on psychosocial outcome, should be taken into account. references: 1. brisch, karl heinz, bechinger, doris, betzler, suzanne, & heinemann, hilde. (2003). early preventive attachment-oriented psychotherapeutic intervention program with parents of a very low birthweight premature infant: results of attachment and neurological development. attachment and human development, 5(2), 120-135. doi: 10.1080/1461673031000108504. 2. walter, c. (2021a). bindung, bindungsbeziehungen und psychosoziale entwicklung von ehemals sehr kleinen frühgeborenen (< 1500g) in der späten adoleszenz — eine prospektive längsschnittuntersuchung. (dissertation zum erwerb des doktorgrades der humanbiologie). medizinische fakultät der ludwig-maximilian-universität münchen. 3. walter, c. (2021b). bindung, frühgeburt und deren langfristige auswirkungen auf die psychische entwicklung bis zur spätadoleszenz. in k. h. brisch (ed.), bindung und psychische störungen. ursachen, behandlung und prävention. stuttgart: klett-cotta. 4. walter, c., beese, j., bembenek, s., sieber, s., geis, l., & brisch, k. h. (2018). selfreported mental health problems among late adolescents previously born extremely or very preterm (ep/vp) and maternal attachment representation: an attachment-based longitudinal study from 320g in incubator to early majority. paper presented at the waimh 2018, rome. note: this paper was to be presented at the 33rd nidcap trainers meeting. unfortunately professor brisch was unable to present his paper. 5. riddell rrp, racine nm, gennis hg, turcotte k, uman ls, horton re, kohut sa, stuart jh, stevens b, lisi dm. (2015) non-pharmacological management of infant and young child procedural pain. cochrane database of systematic reviews, doi. org/10.1002/14651858.cd006275.pub3 6. axelin a, salantera s, lehtonen l. (2006) ‘facilitated tucking by parents’ in pain management of preterm infants— a randomized crossover trial. early human development, 82(4):241–247. doi.org/10.1016/ 7. alinejad-naeini m, mohagheghi p, peyrovi h. (2014) the effect of facilitated tucking during endotracheal suctioning on procedural pain in preterm neonates: a randomized controlled crossover study. global journal of health sciences, 6(4):278-284. doi: 10.5539/ gjhs.v6n4p278 8. obeidat h, kahalaf i, callister lc, et al. (2009) use of facilitated tucking for nonpharmacological pain management in preterm infants: a systematic review. the journal of perinatal and neonatal nursing, 23(4):372–377. doi: 10.1097/ jpn.0b013e3181bdcf7 9. shah ps, herbozo c, aliwalas ll, shah vs. (2012) breastfeeding or breast milk for procedural pain in neonates. cochrane database of systematic reviews, 12: cd004950. 10. vu-ngoc h, et al, & duong pdt. (2020) analgesic effect of non-nutritive sucking in term neonates: a randomized control trial. pediatrics and neonatology, 61 (1): 106-113. doi: org/10.1016/j.pedneo.2019.07.003 11. blass e, watt l. (1999) sucklingand sucrose-induced analgesia in human newborns, pain, 83(6): 611. doi.org/10.1016/s0304-3959(99)00166-9 12. kassab m, anabrees j, harrison d, khriesat w, chen s. (2017) sweet taste drinks effects on reducing injection pain and associated stress among infants: a meta-analysis of randomized controlled trials. open journal of pediartrics and neonatology, 1(1): 1-12. 13. beauchamp tl & childress jf. ( 2013), principles of biomedical ethics, seventh ed., new york: oxford university press 14. litmanovitz i., (2021) combined multimodal cerebral monitoring and focused hemodynamic assessment in extremely low birth weight infants – potential benefits or potential costs? developmental observer 14(2): 18-20. doi: 10.14434/do.v14i2.33001 15. deshpande p, jain ríos dr, bhattacharya s, dirks j, baczynski m, mcnamara kp, hahn c, mcnamara pj, shah p, guerguerianb am. (2020) combined multimodal cerebral monitoring and focused hemodynamic assessment in the first 72 h in extremely low gestational age infants. neonatology, 117:504–512. doi: 10.1159/000508961 (continued from p. 18) 32 • 2023 • developmental observer n i d c a p o n t h e w e b nidcap training centers – facebook pages the promotion of nidcap on facebook continues with new pages being added. over the past few months, we have seen these pages promote conferences, seminars and support sessions, helpful information, new publications, achievements, and celebrations of nidcap. please visit these sites and explore other information and achievements to help you celebrate nidcap. nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/profile.php?id=100069429309444 https://www.facebook.com/nidcap https://www.facebook.com/profile.php?id=100069769423304 https://www.facebook.com/groups/3103556629927874/?hoisted_section_header_type=recently_seen&multi_permalinks=3357786371171564 2023 • developmental observer • 33 n i d c a p o n t h e w e b nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/nidcapaustralia https://www.facebook.com/profile.php?id=100069769423304 https://www.facebook.com/profile.php?id=100063585520167 https://www.facebook.com/nidcap.sweden 34 • 2023 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: annette villaverde email: annette.villaverde@commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: angela casey, rn, bn and kaye spence, am, mn contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattinger-jürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: majken grund nielsen, rn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: jacques sizun, md co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr 2023 • developmental observer • 35 n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: alberto berardi, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail.com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sant joan de déu barcelona nidcap trainer center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: agnes linnér, md, phd co-director: siri lilliesköld, rn, ms contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: beverley hicks, ot email: beverleyann.hicks@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 12 • 2023 • developmental observer f r o m t h e s c i e n c e d e s k form and function. the phrase appears often in english, sometimes modified to specify that “form follows function”. this rubric is attributed to louis sullivan, a renowned architect of the late 19th century (the “father of the sky scraper”), especially famous as a mentor to frank lloyd wright, who professed the same rule. other industrial specialties, such as automobile and home product design, software formulations, robotics, evolutionary biology, paleontology, and more, tout the same. in such diverse areas and more, there is recognition of the intimate relations, at times the oneness, of form (structure) and function. here we turn our attention to the brain, specifically to the early developing brain. most of us understand the immaturity of the newborn human brain and the extra fragility and vulnerability of the incompletely-formed brain of prematurely born infants. the early-stage brain is often considered to be a major symbol, if not the actual target, of nidcap practice. understandably, many consider developmental care as “brain care” in which early brain growth and development is both protected and actively supported by providing physical, behavioral, and emotional contexts that channel healthy brain maturation. this is a kind of mantra in the world of developmental care, including among nidcap practitioners. it’s one thing to profess the special relation of developmental care on brain development. it is another thing to see it. but how can we look into a baby’s brain and see structural health and proper functional capabilities or the opposite? how do we see into the brain and its development? remarkably, there are now numerous ways “to image” the brain. in this article we offer a friendly guide to a popular imaging technology, magnetic resonance imaging (mri), and two of its most popular modalities: structural mri and functional mri (also known as fmri). we do this to take you a little deeper into the technical side of these methods. as we describe how they work, it will clarify what they tell us. understanding this should deepen your appreciation of the relations among science, engineering, and many important practices in contemporary health care – including those in the newborn intensive care unit. structural and functional mri are captured from the same device the giant tube in which a patient is positioned, where high tech hardware cranks, rumbles, and whirs. as you will note, the same electromagnetic processes are employed. yet structural mri displays form, while fmri displays function. despite the intimate interdependence of form and function, these two kinds of imaging are different in process and in use. first, let’s consider the structural mri as it is applied to brain imaging. mri technology acts on and takes measures from some of the smallest imaginable elements in the brain – the nucleus of individual hydrogen atoms, most of which are part of the water in and around all brain cells. the nucleus of a hydrogen atom is a single proton, and the hydrogen proton nucleus spins on its magnetic axis (imagine our planet earth spinning on its axis). when a brain is exposed to a strong magnetic field of an mri scanner, the protons’ axes shift from random orientations to lining up in a common orientation. while temporarily arranged in the same orientation, these charged axes create a directional magnetic vector. the scanner then adds radio waves that sweep over the magnetic vector, deflecting it and causing it to resonate. the dynamics of this nuclear magnetic resonance can be read as radio frequency (rf) pulses, and these are the signals that are captured, quantified, and spatially organized by computer wizardry into detailed gray scale images. with awesome precision, the strength of the magnetic field can be manipulated, and with each change in energy, the axes of nuclei at differrevealing form and function with brain imaging silvina l. ferradal, phd assistant professor, intelligent systems engineering, indiana university (usa) jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university (usa) nfi science committee, associate editor for science doi: 10.14434/do.v16i3.36568 figure 1. a coronal view with structural mri of a full term infant full term infant 2023 • developmental observer • 13 f r o m t h e s c i e n c e d e s k ent depths are altered and measured. this produces images of successive “slices” across the brain, at any angle or depth! we can see form revealed, often in exquisite detail. figure 1 is an example. mri can be similarly applied all over the body and has revolutionized many kinds of medical diagnoses and analyses. again, structural mri reveals form. no physiology, no function is exposed. now we turn to fmri for brain imaging. function is “up front” in fmri thanks to the use of the magnetic properties of hemoglobin, depending on whether it is bound to oxygen molecules or not. when hemoglobin is bound to oxygen, it is repelled by magnetic fields (diagmagnetic) and when hemoglobin is unbound to oxygen, deoxyhemoglobin is attracted to magnetic fields (paramagnetic). increased neuronal firing in a particular area of the brain as part of its involvement in some sensory, motor, cognitive or physiological activity brings a concomitant increase in energy demand in the activated region. oxygen is an essential part of the biochemical pathways of such metabolic activity. the arteries and minute capillary branches that perfuse the networks of the activated neurons will respond to increases of local cellular activity by dilating. such dilation increases local blood flow to the active areas, thereby meeting the larger demands for oxygen and glucose. as with the structural mris described earlier, the effects of rf waves on the magnetic fields become the signal detected by the fmri. a special measure is used, called the blood-oxygenation level dependent response (or bold). the bold signal is a change (increase or decrease) in the proportion of oxyhemoglobin relative to deoxyhemoglobin. the contrast between the oxygenation from its prior baseline is the signal. in other words, this method does not directly reference neuronal activity, nor does it measure the oxygen itself. rather, the bold signal identifies areas where there are relative changes in oxygenated hemoglobin presumed to correspond to the immediate metabolic needs of the neurons. sophisticated analyses of these signals can achieve remarkable spatial resolution, mapping active areas about 1mm in size. these are displayed as maps of contrasting increases or decreases in regional activities, shown as graded changes in terms of color-coded nodes on a brain image. dynamic brain function can thus be spatially portrayed by area, by network, or by structure. figure 2 shows contrasting activities measured on the motor cortex and another image showing contrasting activities in a deeper, visual region. we have merely scratched the surface of the creative combination of physics, chemistry, cell physiology, and systems neuroscience that has yielded a variety of imaging modalities. beyond the technical tour de force represented in the use of magnetic resonance imaging is a panorama of applications. because disease conditions usually include an increase in water content, mri is suited for localizing some diseases. brain function depends on brain structures large and small. mri-based methods are used globally across the brain and microscopically on increasingly smaller scales of function. clinically, brain imaging is used to recognize early conditions of damage or malformation to predict outcomes and, significantly, to identify when and where therapeutic interventions can be applied. brain imaging has revolutionized basic research as well. the tens of thousands of research papers describing insights gleaned from seeing brain structures within a living body as well as mapping dynamic functions have shaped entire new areas of neuroscience. we hope to contribute at least one more developmental observer column on brain imaging, next focusing on applications suitable for newborns, including those born prematurely, for these babies present special challenges – and invite extra benefits from the knowledge gained on seeing the processes of brain development in the context of nidcap practice. unlike previous columns from the science desk, this one is not a commentary on a target article, but is an essay that in some ways, one side of a conversation. as such, we invite responses or questions. if this brief introduction to brain imaging inspires questions or comments, please contact us. we will gladly incorporate your input into a future essay – or simply answer your email. contact us at: silferra@iu.edu or alberts@indiana.edu. figure 2. functional maps for a group of term neonates as measured by fmri developmental observer b jörn westrup is a visionary and an influencer who, together with agneta kleberg and the karolinska nidcap team, has spread the philosophy of developmental care throughout sweden and scandinavia over the past 25 years. from my point of view, björn has played an extraordinary role in the development of infant and family centred developmental care (ifcdc) and nidcap across europe and worldwide. when i met him for the first time in 2009, i was very impressed by his strength of conviction and persuasion, the finesse of his understanding of nidcap and his involvement in research in ifcdc. i had the chance to be warmly welcomed for more than one year in stockholm where i had the opportunity to “breathe” and “smell” nidcap and mother infant couplet care from the inside, especially at danderyd, ki hospital where björn was the head of department for many years. i realized how resilient and skilled he was to carry system change and to succeed in the implementation of nidcap and parental involvement as primary caregivers. this experience contributed a lot to change my perception and vision of what perinatal care can be. björn is a sensitive and endearing person, also very experienced in facilitating working groups. i learned a lot from his sense of consensus and balance while working with him as co-chair of the efcni topic expert group on ifcdc. it has been a great privilege for me to collaborate with him in a very friendly and supportive atmosphere. björn is also a great epicurean who knows at best how to enjoy great moments of friendship! we have many things to learn from your past and continuing journey, björn. thank you very much for sharing your story with us. björn westrup, md, phd 20 22 | v o l 1 5 | n o . 2 the official publication of the nidcap® federation international the key is zero separation. — björn westrup, md (continued on p. 2) doi:10.14434/do.v15i2.34360 profile inside profile .................................................................... 1 editorial ............................................................ 5 family voices ............................................... 6 world nidcap day .................................. 9 predictability of neonatal .............. 10 sucking for later developmental outcomes letters to the editor ............................ 11 supporting oral feeding in ......... 12 fragile infants science desk .............................................. 15 the use of caffeine ............................ 18 nidcap training centers ............... 20 worldwide global perspective-rwanda ..... 24 nidcap on the web ............................ 26 nidcap training centers .............. 28 doi: 10.14434/do.v15i1.33773 interviewed by pierre kuhn, md, phd 2 • 2022 • developmental observer björn westrup is a paediatrician and neonatologist with a phd. he was a senior consultant in neonatology and the director of the karolinska nidcap training and research center at astrid lindgren children’s hospital, karolinska university hospital since its start in 1999. it was the first nidcap center in europe and has played a leading role in the development of other european centers. dr. westrup was also a member of the nidcap federation international’s first board of directors. he has pioneered the development of infant & family centered developmental care (ifcdc) and mothernewborn couplet care (mncc) in europe. björn organised a unique meeting in sweden with the karolinska nidcap team. the stockholm conference on ultra-early intervention is an internationally renowned and acknowledged meeting in sweden dedicated to ultra-early intervention in ifcdc. he has been and is still very involved in research in that field and especially in immediate skin-to-skin contact in preterm infants after birth with the aim to avoid separation of infants from their mothers and fathers. björn has also chaired the topic expert group dedicated to ifcdc of the european standard of care from the european foundation of the care of newborn infants (efcni). pk: when and how did you get interested in developmental care? bw: during my first rotation into neonatology in the paediatric residency program. the hospital was a small county hospital in falun in the forest area of sweden and was quite old fashioned and had just started allowing parents into the paediatric units. parents were not allowed in the neonatal unit. i saw the importance of parents. a senior colleague and head of the paediatric public health program fought for parents to be allowed in the neonatal unit. he set me a challenge as a junior doctor to get parent’s involved in their infant’s care. i started to observe different infant behaviours when the parents were present. towards the end of 1989 i attended a conference organised by professor hugo lagercrantz at the karolinska where heidelise als was an invited presenter. i was intrigued with the combination of natural science and behavioural science. this gave me some theoretical context to explain what i had seen. on return to my unit, i mentioned this to a clever young neonatal nurse, agneta kleberg, who was enthusiastic about the concept. i arranged for funding and brought agneta to boston where we were both introduced to nidcap and apib. actually, we had just asked for a visit but were instead offered a four-day introduction of both nidcap and apib – a surprising visit but that later proved be very instrumental for the development of nidcap in sweden and europe. heidi was wise and strategically savvy as always. pk. could you tell us more about your nidcap journey? bw: when we returned to sweden, i realised that, at that point, there was not sufficient scientific evidence to a general recommendation for implementing nidcap and we needed more research before starting the program. a prospective phase-lagged observational study was commenced during nidcap training of myself and agneta. data was collected for the control infants during agneta’s and my training phase. after a wash-out period with staff training we prospectively recruited the nidcap infants and parents. the main findings of the three-year follow-up was a difference in behaviour in the nidcap cohort. there were fewer internalising problems and better parent child interactions in the nidcap group. we found no short-term benefits. when hugo lagercrantz in 1994 heard about our study in falun, he invited us to stockholm to conduct a randomised controlled trial on nidcap as part of our phd programs. at the same time, we continued to consolidate the nidcap based care in falun, which took a lot of energy. agneta wrote the swedish handbook on nidcap which was also translated into norwegian. she was a fantastic tutor and implementor. nevertheless, it was a great challenge to promote nidcap as it was quite controversial, and many professionals in the neonatal community in sweden and internationally were quite sceptical. however, more parents were included in their infant’s care and were very positive. in addition, we had important and continuous support of two professors hugo lagencrantz from stockholm, and nils svenningson from lund. despite the sceptic, we were not discouraged and continued. there was a gradual acceptance, however it is still not in all units in sweden. today nidcap and/or fine is practiced in 15 units across sweden. fine has been very well received and it led to more nidcap training. i believe the development of fine has been crucial for ifcdc and nidcap. we see more people interested in nidcap. pk: can you summarise why nidcap is essential to you? bw: firstly, it is very attractive to organise the care according to a framework that incorporates natural, behavioural sciences and theory of systems change. secondly, the core pillars are ethical for sensitive care based on the infant’s own voice and behaviours, and thirdly, the shortand long-term research results show positive effects on both child health and development and parents wellbeing and mental health. pk: can you tell us how you see infant family centred developmental care and nidcap – are they the same? bw: ifcdc is a generic term for a framework of newborn care that incorporates the theories and concepts of neurodevelopment, neuro-behaviour, parent-infant interaction, parental involvement, breastfeeding promotion, environmental adaptation, and change of hospital systems. it is based on the leading-edge work of als and her colleagues in the nidcap federation international (nfi) and brazelton and on the world association for infant mental health declaration of profile bjorn westrup phd, continued from p. 1 2022 • developmental observer • 3 infants’ rights. the core pillars of ifcdc are sensitive care based on infant behavioural communication and cues gives the infant a voice and is beneficial for brain growth, parent engagement supports parental wellbeing and infant development, and customised adaptations of the nicu environment and hospital system as a whole. ifdc is more descriptive and general in terms of ethics and legal benefits. whereas nidcap is a philosophy and a caregiving approach that has a training program, so far, is the only program that includes all aspects of ifcdc. the work of als and the nfi has greatly influenced on the concept of ifcdc and will surely continue to play a significant role in its future development. pk: are there other programs that are part of ifcdc? bw: yes, there are many and some quite specific. for example, breastfeeding, and skin-to-skin care are important components of ifcdc. there are also more specific programs. however, nidcap is the most developed and research based. [figure 1] as far as i have understood, ficare (family integrated care) is for example a program for parental involvement more, and in itself not a program that supports the whole idea of ifcdc. in contrast, the close collaboration with parents program include most of the components of ifcdc, especially the behavioural part and parental involvement. pk: can you tell us how you became involved in the efcni standards and how important they are to you? bw: these standards are very important tools to initiate change and improve the quality of care in europe and beyond. most importantly they are multi-disciplinary. they are going to be revised regularly and the expert groups have started inviting comments and recommended changes. it is important to acknowledge that the initiative for the standards was taken by parent organisations under the broad umbrella of efcni. the standards were written in collaboration with parents and endorsed by professional and scientific societies in europe. standards are playing a role globally. the us design standards and idc standards are complimentary to the european standards, and i strongly believe the collaboration between the two groups will continue. de ve lo pm en ta l c ar e pr og ra m s/ in te rv en tio ns breastfeeding coinn council of international neonatal nurses eadcare european association for developmental care efcni european foundation for care of newborn infants icm international college of midwives inkmc international network of kangaroo mother care nfi nidcap federation international waimh world association of infant mental health wapm world association of perinatal medicine who baby friendly initiative theories and training taught by professional organizations (eg. nfi, brazelton touchpoint center), higher education facilities, local health organization/services. the programs vary in regards to comprehensiveness of training and support for systems change. some programs include several or all interventions exemplified above. global refers to all babies born in high, middle and low resource settings. developed by bjorn westrup and kaye spence for the nfi work in progress theory base & training requirements global targets figure: global perspective of infant and family centered developmental care collaboration between organizations (not exclusive, examples only) immediate skin to skin contact kangaroo mother care basic, intermediate and advanced prrograms nidcap nidcap directed care nidcap certified nurses all newborn infants in all settings stable neonates at term stable neonates, continuous, 24/7, follow-up program neurodevelopmental care scbu/nicu/ follow-up hospitalized newborns know ledge translation and system s c hange 4 • 2022 • developmental observer pk: what about the who study on immediate ssc with preterm infants: could you summarize the scientific rationale for us? bw: the rationale is that 20 million babies are born worldwide annually with a need for neonatal care. we cannot only focus on high income countries. we need to turn to countries with high mortality in low-birth-weight infants globally. if we want to make a difference, then we need to consider the lowand middle-income countries. my experience at the karolinska and through my lifelong experience with ifcdc and nidcap makes me realise it is beneficial with early skin-toskin contact for small vulnerable infants. in collaboration with nils bergman from south africa, we undertook observational studies to improve short term health outcomes in lowand middle-income countries to increase survival. one finding was better stabilisation at birth. it took eight years to convince the who and the melinda and bill gates foundation to fund the study in nigeria, malawi, ghana, tanzania, and india. the target group were infants born between 1000g and 1800g. we planned to recruit 4000 maternal/infant pairs. however, the data safety and monitoring board stopped the trial after 75% recruitment due to a statistical benefit in the intervention group, see: who immediate kmc study group et al. immediate “kangaroo mother care” and survival of infants with low birth weight. the new england journal of medicine, 2021, 384, (21): 2028-2038. doi:10.1056/nejmoa2026486 pk: what do you see as the challenges and barriers for implementing early skin to skin for infants over 1000g? bw: there needs to be a lot of training and support for immediate skin-to-skin. the key is zero separation – keeping infants and their mothers close both physically and psychologically. it necessitates a very strong collaboration with obstetrics in order to provide medical care for the mother while she stays in the nicu – mother-newborn couplet care (mncc) in mother-nicus. however, you need to have strong leadership to set the goals and change professional attitudes through training and education. we also need changes in nicu design as well as ensuring quality care for mother /infant dyad. pk: is immediate skin to skin challenging? bw: it is very challenging, and it will take decades before there is a general implementation across countries and globally. i would like to finish with a positive outcome. following on from our and other studies, the government in india have issued a directive to re-build all the nicus, that is over 1000 units. the goal is to accommodate mothers close to their infants as well as implementing developmentally supportive care. moreover, who will in 2022 publish a general recommendation of immediate and continuous kmc for all sick or small newborn babies. it will take many years to ensure infantand family-centered developmental care including newborn couplet care for all – however we have made an important start. pk: has nidcap affected your personal life? bw: it helped me enormously in my clinical work as a neonatologist, it makes it much easier to assess the condition of the newborn and its family and understand their needs. nidcap makes the work more interesting and rewarding. my nidcap work and involvement in training and research is the foundation of my engagement in who global research scale-up project of kmc. also, it has been very important for my own scientific journey. on a personal level, i am not so sure that my own family members are convinced that i am successful in relationship-based and not task-oriented behaviour but it hopefully has helped. pk: thank you very much björn for your time and kindness during this interview and also for all the incredible work you have done for the care of vulnerable preterm infants and their families.a mother’s presence the netherlands nidcap care in the moment us ed w ith p er m is si on r ac he lle v an d er m eu le n 2022 • developmental observer • 5 the world being in a pandemic has made us re-think the way we do things and has challenged us about what is normal. one thing for certain is that the nidcap community has gone to great lengths in meeting the challenges and we hear of new innovations to the nidcap training. an example is the training occurring in rwanda and in this issue, patrick manibaho tells us about their efforts with nidcap training by distance. we learn about björn westrup and his brilliant work over several decades, sylvie mingy enlightens us on the achievements of the french nidcap training center in brest. with such inspirational people, the nfi can be proud of its members. the science and art of feeding newborns is explained by erin ross and marjorie palmer, in addition brenda tarka provides a way of helping babies feed. finally, we are taken on a parents journey of the highs and lows of intensive care in japan. it is important for all health care professionals to learn from and about cultural practices in different countries. last month we saw the celebration of nidcap through world nidcap day. jennifer degl writes about the celebrations and encourage us to think about next year. it is important that we continue to celebrate the achievements of the nfi and the membership. kaye spence am senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia doi: 10.14434/do.v15i2.34359editorial jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board cover photograph of lara from sydney, australia used with permission. 6 • 2022 • developmental observer f a m i l y v o i c e s m asahiro was born at 22 weeks gestation at the tokyo metropolitan bokutoh hospital and weighed about 400 grams. immediately after his birth, masahiro developed respiratory distress with poor lungs and became seriously ill and needed nitrous oxide gas and respiratory support. masahiro was his parents’ first child, and every day they were with their son, they gently touched masahiro and talked to him affectionately. miwa and teruhisa, masahiro’s mother and father, were able to read masahiro’s behavioral cues so well. during one skin-to-skin care, as masahiro rested on miwa’s chest, she sensed, based on his expression, that his pain and distress had eased. likewise, when teruhisa held him for skin-to-skin, masahiro’s eyes would open, his face would shine, and he appeared delighted with the experience of being close to his father. it was as if masahiro was enjoying the attention. shortly after six months, and masahiro’s half-birthday, it was with great sadness that his parents said goodbye to their son who embarked on an eternal journey in april 2021. following masahiro’s passing, masahiro’s mother, miwa communicated to our staff, “thanks to everyone, we have become a family”. these words provided me with a little relief as everyone who had cared for masahiro was filled with great sadness for his parents. later, we received a letter from masahiro’s family addressed to our hospital staff. i would like to now share the letter masahiro’s family sent us as it provided us with a great deal of courage and energy. to everyone at tokyo metropolitan bokutoh hospital nicu dear doctors and nurses, for medical professionals, i presume that the days will continue to be unrelenting. i am full of respect and gratitude to everyone who is working hard every day in the midst of anxiety and great tension. thank you again. thank you to everyone for taking care of our son masahiro while he was in the newborn intensive care unit. i was able to complete the forty-ninth day of the memorial servicea without delay. it seems that the six months spent in the nicu were short, but i think it is more than enough time for our family. masahiro did his best. the six months my son was alive was in the midst of widespread fear of covid-19 infection. i think there were various difficult decisions in the hospital, such as protecting the bond between parents and children and protecting the safety of everyone involved. under such circumstances, you allowed us to visit our son 24 hours a day, encouraged active skin-to-skin care, and provided care that was close to our hearts until the very end. every day, everyone was thinking and discussing what was the best that could be done at that time. you listened sensitively to the words of our family and worked together to provide care and treatment. and above all, you treated masahiro and our family with love. i’m really grateful. thank you very much. we cherish the growth record with photos that you gave me as well as masahiro’s diary that we wrote together and value. thank you for the many messages you wrote while you were so busy. it is an important treasure for us. losing a loved one is never easy, especially when the loss is a baby. in this story, we hear from the nidcap trainer that worked with a family as they cared for their baby who was born very premature, and the impact of helping the baby’s parents learn how to read their son’s behavioral language and provide him support. following the loss of their son, the baby’s mother sent a letter of gratitude to the staff in the newborn intensive care unit and shared how the individualized and developmentally sensitive care their son received profoundly influenced their experience, they described what nidcap meant to his family and how it changed their perspective of an intensive care setting. the comforting words that this mother provided to the staff in her letter also challenged staff to expand the nidcap work throughout their country so that other babies and families can benefit from this family centered, evidenced based approach to developmental care. nidcap from a parent’s perspective: an open letter from a family column editor: debra paul, otr kanako uchimi, nidcap trainer and author/translator doi: 10.14434/do.v15i2.34361 2022 • developmental observer • 7 f a m i l y v o i c e s without each and every one of you, we wouldn’t have had six months with masahiro. ma-kun. ma-kun ... i still can’t forget how hard he responded to many calls. we laughed and rejoiced together in masahiro’s small changes and growth, and thanks to everyone, our first child-rearing became fun and happy. i can’t heal my sadness and pain, but when i remember your faces, it still makes me feel better! i am really grateful to have met all of you. i can’t forget how you understood the feelings of a newborn premature baby and how to respond to them. in the midst of all the confusion, your voice and actions towards my son served as a model for us, and each word brought us closer to our baby. i was really surprised to find that facilitated tucking and skin-to-skin care also gave masahiro the best experience that we could imagine. putting my hands in the incubator all day and talking to my son, singing a lullaby, and so on. thank you for watching over masahiro with warm eyes. one day, i learned that “nicu is not just a place to treat.” i understood that the nicu is a place to help families learn about their baby’s responses and language as well as their child’s development and on-going care. i remember feeling relieved as until then i thought it was special place to treat baby illness in every way. i was very happy to feel that nurses are not only for treatment, but also for helping us raise our children. i think situations will vary depending on the baby and family, but please continue to be a friendly place that is supportive of the premature baby and family. and we hope that the efforts of nidcap will be taken for granted throughout japan in the future. we look forward to seeing how you continue to you create an ideal environment for babies’ development, care and growth. best regards, miwa june 2021 a this is a japanese custom. the memorial service will be held 49 days (7 weeks) after death. the day of the final decision on whether to go to heaven is 49 days after death. note: the below is the mother’s letter in original format. 【家族コラム原稿案】 まさひろくんは２２週、四百数十グラムで、私たちの病院で生まれました。 彼は生まれた直後から肺の状態が悪く重症でした。noガスと呼吸器のサポートをず っと必要としていました。ご両親にとって初めてのお子さんで、毎日、まさひろく んに手で優しく触れ、優しく語りかけてくれました。そして、ご両親は彼のしぐさ を読み取れるようになりました。 あるときのカンガルーケアでは、ママの胸の上で彼の表情は安らぎました。そして 彼の痛みや苦痛が和らいでいることをママは察知しました。パパのときは目も口も 開けて表情が輝き喜んでいました。それはまるでアトラクションを楽しんでいるか のようでした。 ハーフバースデーを迎えて間もなく、　2021年４月、永遠の旅に出た優裕くんとの 別れは大きな悲しみでした。しかし、優裕くんのお母さんが「皆さんのおかげで私 たちは家族になれました」とおっしゃってくださったことに、大きな悲しみの中で 少しの安堵感を覚えました。後日、私たちの病院スタッフへご家族からお手紙をい ただき、私たちは大きな勇気とエネルギーをもらいました。そのお手紙をご紹介し ます。 墨東病院nicuの皆様へ 拝啓 masahiro’s diary masahiro’s team 8 • 2022 • developmental observer n i d c a p t r a i n e r s m e e t i n g 2 0 2 1 　医療関係者の皆様にとっては、まだまだ気の抜けない日々が続くことと推察いた します。 日々、不安と大きな緊張感の中、尽力されている皆様には、心から尊敬と感謝の思 いでいっぱいです。今日もありがとうございます。 　息子、優裕の生前中は大変お世話になりました。四十九日の法要も滞りなく済ま せることができました。 　nicuで過ごした6か月は短いようですが、私たち家族にとっては十分過ぎる時間 であるようにも思います。よく頑張ってくれましたから。 　息子の生きた6か月はまさにコロナの感染への恐怖が広がる中にありました。 院内では親と子の絆を守ること、関わる人すべての安全を守ることと、いろいろ難 しい判断があったと思います。 そんな中で、24時間の面会を許可してくださったり、積極的なカンガルーケアを実 施してくださったり、私たちの心に寄り添ったケアを最後の最後まで行ってくださ いました。 その時できる最大限のことを皆さんが日々考え、話し合ってくださっていたこと。 家族の言葉に敏感に耳を傾け、連携してケアや治療に力を尽くしてくださったこ と。 そして何より、優裕と私たち家族に愛情をもって接してくださっていたこと。 本当に感謝の思いでいっぱいです。ありがとうございました。 皆さんからいただいた写真付きの成長記録や皆さんと書き綴った優裕ダイアリーも そのひとつです。忙しい中、たくさんのメッセージをありがとうございました。大 切な宝物です。 皆さんお一人おひとりなくして、優裕との6か月はありませんでした。 まーくん。まーくん…。 たくさんの呼びかけに、一生懸命こたえる姿が今でも忘れられません。 小さな変化や成長に一緒に笑い、喜び合ってくださり、私たちにとって初めての子 育ては皆さんのおかげで楽しくて幸せなものになりました。 まだまだ悲しみやつらさは癒えませんが、みなさんの顔を思い出すと今でも元気が 出ます！ 皆様との出会い、本当に感謝しています。 早産で生まればかりの赤ちゃんの気持ちをどう汲み取り、どう接したらよいのか。 とまどいの中、皆さんの赤ちゃんに対する声かけや行動は私たちのお手本となり、 言葉の一つひとつが赤ちゃんとの距離を縮めてくれました。 ホールディングやカンガルーケアも、私たちが想像する以上に、赤ちゃんにとって 最高の時間を与えられるということも実感し、本当に驚きました。 保育器に一日中、手を入れて話しかけてはウトウトしたり、子守歌を歌ったり…。 そんな姿も温かい目で見守ってくださり、ありがとうございました。 「ｎｉｃｕは治療する場ではありませんよ」とある日、教わったこと。 ｎｉｃｕは家族とともに赤ちゃんの子育てを手助けする場所なんだ、と理解しまし た。それまでは病気をあらゆる方法で治療する場所で特別なんだと思っていただけ に、気持ちが和らいだことを覚えています。そして、皆さんが一緒に子育てを手助 けして応援してくださっているんだと感じ、とてもうれしかったです。 　状況は赤ちゃんやご家族によっても様々だと思いますが、これからも赤ちゃんや ご家族に寄り添った優しい場所であり続けてください。 　そして、ｎｉｄｃａｐの取り組みも、今後、日本中で当たり前に取り入れられる ことを私たち家族も願っています。赤ちゃんの心のケアと、成長と発達のために理 想的な環境づくりを今後も期待しています。 敬具 2021年6月 優裕の父、母 masahiro with his mother, miwa mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 2022 • developmental observer • 9 world nidcap day 20 22 jennifer degl, ms family representative nfi board member doi: 10.14434/do.v15i2.34369 happy 20th anniversary to the nfi! we sure know how to celebrate as can be seen by the multitude of events hosted by our members throughout the month of march in concert with our 3rd annual world nidcap day. march 20th was exceptional this year. so many of our members celebrated world nidcap day in their hospitals with activities, parties and some even made specially designed nidcap themed cookies. several bridges and buildings across the globe were glowing in teal to help us spread awareness about the nidcap practice so that we can continue to share it with more hospitals, babies, and families. one event that we are especially proud of is our first ever world nidcap day virtual gala. it was no small feat to pull off such an event. many members of the nfi advancement committee and others worked tirelessly to plan each portion of the gala. one member of the gala planning team that deserves special recognition is sandra kosta. sandra seemed to work around the clock to make sure the event went off without a hitch and it worked. there were many presentations from several nfi members from all over the globe. the compelling stories from africa and japan conveyed the true meaning of nidcap while reminding us all that the nidcap practice is truly a global one. our family presentation was also quite beautiful. latoshia rouse’s family story was a true gem. hearing her story while seeing her beautiful children play in the background shows us how important the nidcap practice is and the impact it makes on babies and families. our gala was full of prizes as well. attendees were invited to bid on several different gift packages, including books authored by our members, developmental care tools such as the zaky, and oneon-one conversations with our nidcap experts including, drs. heidelise als, jane holmes bernstein, nikk conneman, and graciela basso. the lucky winners have been notified. let’s not forget to mention the inauguration of the newly opened lundmalmö nidcap training and research center in sweden that occurred during the swedish conference on ultra-early intervention. this event was march 24, 2022, and many of our own nfi members gave presentations including dr. heidelise als, dr. deborah buehler, and more. we are so happy to have yet another training center open. thank you to each and every one of you who attended an event or shared it with your colleagues, donated your hardearned money, celebrated in your hospital, or just wore teal to help us spread the word about nidcap during the month of march. we are thankful for you! is it too early to start world nidcap day 2023? mid-hudson bridge, new york lit up in teal “the compelling stories from africa and japan conveyed the true meaning of nidcap while reminding us all that the nidcap practice is truly a global one.” 10 • 2022 • developmental observer a s early as 1974, it was reported that a deviant suck was a sign of neurological issues.1 hill and volpe reported in 1981 that, difficulty with neonatal sucking has been described as an early indicator of neurologic abnormalities.1 typical sucking in the infant has been well described in the literature. it is generally accepted that, in the preterm infant, the immature pattern is characterized by short bursts of three to five sucks followed by a pause of equal duration. in the term infant, there is a continuous sucking burst of 10-30 sucks per burst with an average ratio of one suck-one swallow-one breath.2 in both cases, the infant is comfortable with coordinated respiration while feeding occurs effortlessly. when an infant is unable to coordinate sucking, swallowing, and breathing in a rhythmical and comfortable fashion, the suck pattern presents as disorganized.3 in this case it is usually caused by the infant’s inability to maintain adequate respiration while also sucking and swallowing. such infants may experience apnea or oxygen desaturation during feeding.4 if feeding persists, the infant may show signs of stress such as finger splay, head turning, widening of the eyes, extension of the limbs, arching backward, or any of the many other behaviors indicative of distress. it is important for the feeder to recognize these signs of stress in the infant, to respond quickly to alleviate the cause of stress which will calm the infant, and to assure feeding is a pleasurable experience.5 the neonatal oral motor assessment scale (nomas) is a tool designed to assess neonatal sucking and distinguish between disorganized and dysfunctional feeding. a recent study reported that infants who lack coordination of suck-swallow-breathe and who also experience stress during feeding, as based on the nomas, have a longer transition time to full oral feedings than those infants who are not stressed during feeding. infants with a disorganized suck who are stressed take 22 days to transition to full oral feedings, while those with no stress can transition in six days.6 dr. xianhong zhang and colleagues in the department of neonatology at the children’s hospital of chongqing medical university in chongqing, china used the nomas to identify abnormal sucking patterns in moderately and late preterm infants and to ascertain the relationship between these patterns and neurodevelopmental outcome at six months corrected age. this study did not enroll infants with neurologic disorders, so no infants were classified as having a dysfunctional suck. infant feeding was classified as either normal or disorganized based on the nomas. the researchers reported that infants who demonstrated stress signs per the nomas, that is, incoordination of suck, swallow, and respiration which result in nasal flaring, head turning, and extraneous movement, along with arhythmical jaw and tongue movements, were at risk for adverse neurodevelopmental outcomes at six months corrected age.7 in addition to infants who present with both a disorganized suck and stress per the nomas, it is also possible to predict later developmental outcomes for infants who present with a dysfunctional suck.8 this suck pattern can be identified by abnormal movements of the tongue and jaw that occur during active sucking and that are never typical. these movements include the lack of a central tongue groove compared to a cupped tongue with a central tongue groove. the tongue instead presents as either flattened/flaccid with an absent tongue groove or is retracted with the posterior tongue humped against the palate.8 during a dysfunctional suck, the jaw may demonstrate an excessively wide excursion pulling the tongue away from the nipple and interrupting the intra-oral seal that is formed between the tongue and the palate. another characteristic of a dysfunctional suck occurs when the jaw is unable to make an adequate downward movement due to a restriction of movement at the temporal-mandibular joint that inhibits smooth downward movement of the jaw. this restriction is secondary to the posterior humping of the tongue against the palate. in all cases when a dysfunctional suck is diagnosed, there is a neurological issue that has been identified or soon will be identified.9 these may include diagnoses such as, grade iii intraventricular hemorrhage (ivh),9 periventricular leukomalacia (pvl), perinatal hypoxic ischemic encephalopathy (hie), seizure disorder, hydrocephalus, meconium aspiration, meconium staining, congenital anomalies, placenta abruptio with decreased muscle tone, chromosomal abnormalities, and neonatal encephalopathy of unknown etiology, to name a few. it has been reported that in addition to an association with dysfunctional sucking, severe ivh negatively impacts the suck-swallow-breathe rhythm. the independent effect of neurological injury in the form of ivh on early neonatal feeding coordination suggests that a closer analysis of feeding may reflect and predict neurological sequelae.9 early diagnosis of the neonatal suck pattern is important because of the complexity of the neuronal network needed to suck and neuroplasticity in infancy. because of this, the skill of sucking has the unique ability to give insight into areas of the brain that may be damaged either during or before birth.10 in 2009, it was hypothesized that a standardized instrument predictability of neonatal sucking for later developmental outcomes marjorie meyer palmer ma, nlp, cc-slp, neonatal/pediatric feeding specialist, speech-language pathologist, founder/director, nomas® international doi: 10.14434/do.v15i1.33788 2022 • developmental observer • 11 for neonatal sucking could offer a cost-effective early screening tool for preterm infants at greatest risk for developmental delay,11 and the nomas provides such a tool. the nomas can be administered at the bedside within two to three minutes by the trained examiner observing a routine feeding offered by the assigned caregiver in the intensive or special care nursery. the examiner first observes the non-nutritive suck during the first burst, first pause, and second burst to rule out sensory conditions such as habituation and perseveration. this is followed by a two-minute observation of nutritive sucking starting once the nipple is adequately and properly placed in the infant’s mouth. the number of sucks per burst and the type of pattern (continuous or burst-pause) is observed and recorded. a disorganized sucking pattern occurs when an infant exhibits too much variability in the number of sucks per burst (sucking bursts have between 5-10 sucks per burst), or the infant demonstrates an inconsistent suck-swallow-breathe ratio. the nomas may also be used for breast feeding infants but will require the examiner to spend more time observing the infant because of the variability of flow that occurs with breast feeding.12,13 nomas-based assessments for neonatal feeding performance have been considered helpful tools to predict neurodevelopmental outcome at six and 12 months corrected age.14 the nomas has been identified as the only neurobehavioral assessment that specifically measures preterm sucking behavior.15 slattery reports in a review article that, early sucking and swallowing measures predicted neurodevelopmental outcome in later infancy in five of the six studies reviewed.16 thus studies show that sucking and swallowing disorders in early infancy serve as potential markers of neurodevelopmental problems and abnormal sucking patterns may reflect neurologic developmental issues in preterm infants.17 the nomas provides predictability for later developmental outcomes for both disorganized and dysfunctional sucking patterns and is a screening tool that can be administered by observation at the bedside by a trained examiner. trained examiners demonstrate reliability in the administration and scoring of the nomas to distinguish between disorganized and dysfunctional sucking patterns to assure the subsequent intervention strategies, therapeutic techniques, and treatment plans are appropriate. currently there are nomas licensed professionals in 46 u.s. states and 40 foreign countries. references 1. hill al, volpe jj. disorders of sucking and swallowing in the newborn infant: clinicopathologic correlations, progress in perinatal neurology. philadelphia. wb saunders, 1981,157-181. 2. gryboski jd. suck and swallow in the premature infant. pediatrics. 1969, 43(1):96-102. pmid: 5764074. 3. palmer mm, crawley k, blanco ia. neonatal oral-motor assessment scale: a reliability study. journal of perinatology. 1993, 13, 28-35. 4. hanlon mb, tripp jh, ellis re, flack fc, selley wg, shoesmith hj. deglutition apnoea as indicator of maturation of suckle feeding in bottle-fed preterm infants. developmental medicine and child neurology. 1997, 39(8):534-42. doi: 10.1111/j.1469-8749.1997. tb07482.x. 5. als h, lawhon g, duffy fh, mcanulty gb, gibes-grossman r, blickman jg. individualized developmental care for the very low-birth-weight preterm infant. journal of american medical association. 1994, 272 (11): 853-858. 6. yi yg, oh bm, shin sh, shin jy, kim ek, shin hi. stress signals during sucking activity are associated with longer transition time to full oral feeding in premature infants. frontiers in pediatrics. 2018, 12, (6):54. doi: 10.3389/fped.2018.00054.  7. zhang x, zhou m, yin h, dai y, li y. the predictive value of early oral motor assessments for neurodevelopmental outcomes of moderately and late preterm infants. medicine (baltimore). 2017, 96(50):e9207. doi: 10.1097/md.0000000000009207. 8. palmer mm, heyman mb. developmental outcome for neonates with dysfunctional and disorganized sucking patterns: preliminary findings. infant-toddler intervention. the transdisciplinary journal. 1999, 9, (3): 299-308. 9. gewolb ih, sobowale bt, vice fl, patwardhan a, solomonia n, reynolds ew. the effect of severe intraventricular hemorrhage on the biorhythms of feeding in premature infants. frontiers in pediatrics. 2021, 23, (9):673152. doi: 10.3389/fped.2021.673152. 10. shandley s, capilouto g, tamilia e, riley dm, johnson yr, papadelis c. abnormal nutritive sucking as an indicator of neonatal brain injury. frontiers in pediatrics. 2021, 12;(8):599633. doi: 10.3389/fped.2020.599633. 11. medoff-cooper b, shults j, kaplan j. sucking behavior of preterm neonates as a predictor of developmental outcomes. journal of developmental and behavioral pediatrics. 2009, 30(1):16-22. doi: 10.1097/dbp.0b013e318196b0a8.  12. palmer mm. identification and management of the transitional suck pattern in premature infants. journal of perinatal and neonatal nursing. 1993, 7(1):66-75. doi: 10.1097/00005237-199306000-00009. 13. palmer mm. developmental continuum of neonatal sucking performance based on the nomas (neonatal oral-motor assessment scale). developmental observer. 2015, 8(1): 11-15. 14. tsai sw, chen ch, lin mc. prediction for developmental delay on neonatal oral motor assessment scale in preterm infants without brain lesion. pediatrics int. 2010, 52(1):65-8. doi: 10.1111/j.1442-200x.2009.02882.x. 15. slattery j. preterm sucking behavior and later neurodevelopment. developmental medicine and child neurology. 2017, 59, (8): 784-785. 16. slattery j, morgan a, douglas j. early sucking and swallowing problems as predictors of neurodevelopmental outcome in children with neonatal brain injury: a systematic review. developmental medicine and child neurology. 2012, 54(9):796-806. doi: 10.1111/j.14698749.2012.04318.x 17. poore ma, barlow sm. suck predicts neuromotor integrity and developmental outcomes. perspectives speech science orofacial disorders. 2009; 19: 44-51. doi.org/10.1044/ ssod19.1.44 i really like the new layout of the developmental observer my compliments for all the work and the professional appearance. there is a lot of content and i like the use of quotes from people in between the articles. – monique oude reimer sophia nidcap and apib training center it was really a pleasure to read the article written by jeff alberts and his review regarding “the effect of gentle human touch during endotracheal suctioning“ from the last issue of the do. i really like the way he analysed it. it is not only his excellent english and the ability to write in an interesting way, but it is the way he sees and thinks about the subject. i was amazed how he referred to my review. i would like to express my thanks. – ita litmanovitz israel nidcap training center letters to the editor continued on p. 18 12 • 2022 • developmental observer supporting oral feeding in fragile infants (soffi®) is a comprehensive approach to feeding preterm infants and infants with medical comorbidities within the hospital setting and after discharge. it is based on observation of the capabilities of the baby at different neurodevelopmental stages and on caregivers consistently responding appropriately. soffi® uses the concepts of the synactive theory as the foundation for observations, and interventions are based on developmentally supportive care concepts. what is unique about soffi® is it focuses on the neurobehavioral development of feeding, with the neonatal intensive care time period considered as the foundation for all later eating development. the goal of soffi® is to ensure positive eating experiences, based on infant behavioral communication, with the overall goal of improving feeding outcomes in-hospital and after discharge. in a recent post-discharge pilot study of healthy preterm infants who did not exhibit feeding problems while in the nicu, 42% experienced some type of feeding problem.1 this is consistent with a review article by pados and colleagues that revealed the overall prevalence of problematic feeding after nicu discharge and before four years of age was also 42%.2 many programs designed to improve feeding outcomes within the nicu only consider outcomes to discharge. soffi® is the only feeding program that has research supporting improved outcomes both within and after discharge from the nicu.3 initially certified in nidcap in 1993, i have focused on the problem of feeding in nicu settings and the poor feeding outcomes in this population. my experience working in both the nicu, starting in 1990, and in the pediatric feeding clinic led me to wonder whether good intentions within the nicu setting were contributing to feeding problems, even though the feeding problems did not reveal themselves until after discharge. over time and with more insight into the neurodevelopmental aspects of learning to eat, it became clear that many professionals do not consider post-discharge outcomes. infants begin eating reflexively and they discharge from the nicu while eating is still reflexive. soffi® teaches that negative feeding experiences from birth through when the infant is eating volitionally are the reason many infants develop feeding problems once home. if an infant is uncomfortable, out of breath, pushed along, in pain, or overwhelmed every time they eat, they develop ways to avoid eating. in fact, this is a wonderful example of classical conditioning. infants learn to escape and avoid eating, and have low appetite, because eating has been paired with repeated aversive experiences. infants do communicate their experiences during feedings, yet feeders often ignore these signs either out of ignorance or out of a desire to help the baby learn to eat and go home. most literature and staff focus on getting infants to eat sooner and to go home sooner. few focus on eating with better skill with a goal of developing long-term enjoyment of eating. quality leads to quantity and one doesn’t have to be sacrificed for the other. soffi® was developed initially to educate local nursing staff and it has grown into an international training program. soffi® has been used as the training framework for several published studies and abstracts.3-5 these studies have shown it is an effective intervention model for preterm infants as well as term infants who are ill, the same populations typically seen within hospital nicus. statistically significant improvements in outcomes at discharge were shown in these studies, yet more importantly, no adverse effects occurred despite changing the focus to quality feedings. unique to soffi®, significant improvements were found after discharge, including fewer infants who 1) demonstrated feeding problems overall, 2) required feeding therapy, 3) vomited, and 4) arched.3 one study showed that supporting oral feeding in fragile infants: introduction to soffi® erin sundseth ross, phd, ccc-slp president, feeding fundamentals, llc doi: 14434/do.v15i2.34364 on-going consultation in the soffi method pe rm is si on fo r u se in d o o nl y 2022 • developmental observer • 13 more infants with significant co-morbidities who discharged home with a nasogastric tube for supplementation transitioned to full oral feedings by three to five months corrected age.5 soffi® educates the trainee on the importance of parental involvement in feeding and infant care in general, and covers learning theory, including the synactive theory and classical conditioning. all experiences are framed within the concept of homeostasis. by understanding the infant’s communication and responding appropriately to their needs, repeated negative feeding experiences are avoided. this helps the infant build the skills for eating and the desire to eat. parents are the primary feeders from the beginning, and breastfeeding is emphasized as the best and most biologically expected way to feed the infant. most infants in the united states will be both breast and bottle-feeding at hospital discharge. bottle-feeding is associated with more physiological challenges during feedings, so bottle-feeding strategies are provided in soffi® training. soffi® offers in-depth information on the development of feeding. infants are developing the neurological and motor ability to eat all through the preterm period. feeding is the most complex activity they will learn to do. feeding is directly tied to maturation, and research repeatedly shows the average age for reaching full oral feedings is 36.5 weeks gestation, plus or minus two weeks. by understanding the developmental nature of feeding and the influence of medical comorbidities, asking infants to do something too challenging can be avoided. infants develop within windows of time, which is often forgotten with eating. many health professionals want all preterm infants to eat by 32-34 weeks, and often infants are pushed to eat by 36 weeks. the literature is full of articles that suggest infants who are still hospitalized at 36 weeks are behind. in fact, half of infants who are developing typically would be still working on feeding. soffi® training brings the concepts of neurodevelopment, learning, and infant behaviors together to teach trainees how to observe and evaluate feedings, and then how to improve feeding experiences. the methodology uses the neurodevelopmental framework of the baby regulated organization of systems and sucking (bross©).6 all interventions are evidence-based, developmentally appropriate, and family-centered. interventions begin well before oral feeding attempts. staff use algorithms for decision-making, and families learn to be co-regulators of their infant during feedings. a parent education program is currently being piloted as well. soffi® is used for preterm and term infants, hospitalized or at home, with or without medical comorbidities. nurses and therapists who work with these infants in the nicu and after discharge are the primary disciplines trained, although dietitians, lactation consultants, physicians, and nurse practitioners have also completed training. soffi® is used by hospitals to change feeding cultures and by healthcare professionals supporting eating development in infants. as one example, all nicu staff within a large hospital are completing training across a two-year period. the focus is on training as well as system issues with both bedside caregivers and leadership. this hospital is collecting infant, parent, and staff outcome data to explore how changes in the bedside feeding culture improves outcomes. feeding is the “last barrier” to discharge because it requires infants to be able to do everything else, all at the same time. it is naturally the last thing they develop, and when the development of swallowing, airway protection, the gastrointestinal system, and the respiratory system are all understood, the complexity of eating is respected. feeding is so challenging because of the neurological and physical development of the infant. the protective swallowing mechanisms and the physiologic, motor, and behavioral state systems are still developing. when feeders don’t know how to observe and respond appropriately during feedings, infants can be exhausted, cough, choke, gag, experience decreases in heart rate and oxygen saturations, or shut down. by training feeders to not only see with new eyes, but to respond appropriately to the communication of the infant, the goal becomes supporting positive experiences within the current development of the infant. additionally, a shared language and philosophy can be taught to the family who are the most important people in their infant’s life and should be the primary feeders. what healthcare professionals teach, and model is what the parents learn. if parents are taught to ignore their infant’s behaviors and to focus on the task of feeding enough volume, the challenges during feedings continue well after discharge. soffi® shifts the trajectory of feeding to develop a strong foundation for life-long eating. references 1. robinson l, heng l, fucile s. investigating the developmental trajectory of long-term oral feeding problems in ‘healthy’ preterm infants. developmental neurorehabilitation. 2022, online. doi: 10.1080/17518423.2021.2011975 2. pados bf, hill rr, yamasaki jt, litt ls, lee cs. prevalence of problematic feeding in young children born prematurely: a meta-analysis. bmc pediatrics. 2021, 21:110. doi:org/10.1186/s12887-021-02574-7 3. horner s, simonelli am, schmidt h, cichowski k, hancko m, zhang g, ross es. setting the stage for successful oral feeding: the impact of implementing the soffi feeding program with medically fragile nicu infants. journal of perinatal & neonatal nursing. 2014, 28:59-68. doi:10.1097/jpn.0000000000000003 4. hanin m, nuthakki s, malkar mb, jadcherla sr. safety and efficacy of oral feeding in infants with bpd on nasal cpap. dysphagia. 2015, 30:121-7. doi:10.1007/s00455-0149586-x 5. horner s, ross e, hancko m, simonelli am, cichowski k, schmidt h. the impact of the soffi on feeding outcomes of medically fragile nicu infants. in the physical and developmental environment of the high risk newborn. 2014, st. petersburg, fl. 6. browne j, ross e. eating as a neurodevelopmental process for high risk newborns. clinics in perinatology. 2011, 38:731-43. doi: 10.1016/j.clp.2011.08.004 “feeding is the ‘last barrier’ to discharge because it requires infants to be able to do everything else” 14 • 2022 • developmental observer the impact of nidcap on the infant, family and society 7*, 8, & 9** october 2022 seminaris hotel bad boll / wala bad boll, germany hybrid meeting hosted by nidcap germany, training center tübingen (full meeting attendance is by invitation only) * friday, october 7, 2022 one day symposium, open to all, see details below ** sunday, october 9, 2022 membership meeting attend the one day nidcap symposium in person or virtually... wala heilmittel gmbh, dorfstr. 1, 73087 bad boll/eckwälden , germany more details and registration information here: nidcap.org/7oct2022-nidcap-symposium http://nidcap.org/7oct2022-nidcap-symposium 2022 • developmental observer • 15 m y childhood home in faraway montevideo was a three-minute walk from the large and fancy national golf club. access to the club and lawns was banned for non-members. on sundays, however, the club would open its gates to the public, and city residents were allowed to stroll the fine grass extensions and enjoy the gift of a huge urban green area. as a child, i spent many sundays exploring each and every corner of that seemingly immense green paradise. nevertheless, for me, golf clubs remain emblems of exclusivity, elusiveness and unapproachability. the first words of the target article1 title signal the topics of concern: “culture”, “research” and “communication”. generally, we think “research” in neonatology involves the creation, dissemination, and application of scientific knowledge. in this case, it is scientific knowledge for the benefit of babies receiving care in a neonatal intensive care unit (nicu). but what does “culture” have to do with such science? our target article is authored by seventeen individuals, along with a workgroup of the international neonatal consortium. degl and colleagues take us on a look into nicus scattered across the world and enable us to see some of the workings through three different sets of eyes. each set of eyes belongs to a distinct group essential to the care of premature or medically fragile infants: neonatologists, neonatal nurses, and parents of babies that received care in a nicu. other professions could have been included, but some important lessons were learned from just these three. the data reported in the article came from a survey constructed systematically by a broad-based group using a stepwise consensus methodology. after a comprehensive literature review, the survey designers highlighted an important set of relatively unaddressed research issues: (i) preterm infants are routinely exposed to drugs that have not been adequately researched (for dosage, effectiveness, safety); (ii) investment in neonatal therapeutics tends to be low, and therefore lags persist in the study of new and existing drugs for newborns, as compared to other populations; (iii) there is a huge need to facilitate the conduct of neonatal clinical trials; and (iv) the participation in this kind of trials is perceived by many as potentially risky, burdensome for parents, as well as ethically challenging. then, with cloud-based software, the group administered an elegantly constructed survey to members of each “stakeholder group”, which yielded 323 respondents (52 neonatologists, 188 neonatal nurses, and 83 parents of nicu graduates) from nicus around the world (see table 1 in the article for demographics). they produced an article that is readable, with thoughtful discussion of results, supported by helpful data. the results revealed differences in perceptions of the research process, research knowledge and its applications. how could this be among groups united by a common cause? a surprising number of parents were never or rarely offered meetings with the neonatal team caring for their baby – a setting where it would be natural and effective to share and explain research knowledge as part of the decision-making process. nicu parents have special forms of knowledge pertinent to research training and education programs, and yet, they were almost never consulted or included. over 80% of the physician respondents felt that existing medications are insufficient to meet the medical needs of nicu patients; they cite unsatisfactory off-label use of medications, in untested dosages for babies. parents and even neonatal nurses are relatively unaware of these shortfalls and the need for reform and guidance in appropriate pharmaceutical research. there were numerous other important revelations about the perception of research protections across the participant groups. significantly, there was great unanimity across the groups, in support of the principle that research should be an important component of a nicu’s work. the strengths of this report stem from the salient trends that are highlighted in it and reflected upon in the discussion. indeed, degl et al. provide a mind-opening perspective. various questions are inspired by their article. how have we not contemplated and discussed these issues? why have we been unaware of some of the real s c i e n c e d e s k not an exclusive club anymore dalia silberstein, phd, rn, nidcap trainer israel nidcap training center, meir medical center, israel target article: the culture of research communication in neonatal intensive care units: key stakeholder perspectives. jennifer degl , ronald ariagno, judy aschner, sandra beauman, wakako eklund, elissa faro, hiroko iwami , yamile jackson, carole kenner, ivone kim, agnes klein, mary short, keira sorrells, mark a. turner, robert ward, scott winiecki, christina bucci-rechtweg and international neonatal consortium. journal of perinatology, 2021,41:826–2833. https://doi.org/10.1038/s41372-021-01220-5 doi: 10.14434/do.v15i1.33787 16 • 2022 • developmental observer challenges? what other summits have yet to be conquered in neonatal care that we have not even attempted yet? clearly, neonatal research is needed, as is its broadly-based dissemination. a nicu’s caregiving culture, along with family-centered developmental care, needs continued implementation and fine-tuning. in such a cultural context, input into new research directions will arise. degl et al. preview some new and needed research questions. while the paper raises a variety of topics for reflection and action, i would like to address two extensions of the ideas in the target article that inspired me. envisioning a path beyond informed consent while we can celebrate recent advances in patient involvement in medical research, parental involvement in neonatal research seems to be evolving more slowly.2 informed consent is one aspect of neonatal research in which parental involvement is formally pursued. since the ‘70s parents have been asked to give permission for their babies to be involved in clinical research. notably, the procedures for informed consent rarely have received input from the principal stakeholders, i.e., parents of nicu graduates.3 janvier et al.2 dig into the process of “informed consent”, beyond signing an agreement to participate. they emphasize the need to integrate parents in the review of procedures for informed consent and describe instances in which parental input improved how parents were approached for participation of their infants in research. they also identify further ways in which parents can be be integrated – from setting research priorities to analyzing and presenting results. bourque et al.4 echo and extend these messages in their discussion of activities performed by resource parents in neonatology, and outline those activities where resource parents may be integrated to optimize research. shen and collaborators5 note that researchers tend to restrict parental input to “later” stages of research, after the study focus has been finalized. they too, provide recommendations for engaging parents in research, and strongly advocate for the enhancement of research that is acceptable and relevant for the population it is intended to serve. visibility and clarity of researchrelated information degl et al.1 advocate for involving the “natural stakeholders” (namely, nurses and families) in nicu research in all stages of the research process. they see neonatal nurses as a crucial interface between families and neonatal research endeavors. i emphasize the potential of increased parental involvement, as i believe parents in the nicu remain especially in need of advocacy. fragile infants have fragile parents. but such parents are accessible and responsive. it is with great respect and admiration that we read a family’s testimony published in the most recent developmental observer,6 illustrating vividly how straightforward the enrollment process can be when a study’s objectives resonate with the values and potential benefits they envision for their child. nevertheless, families might also experience profound dilemmas regarding enrollment.3 appropriately, we professional caregivers – each of us in our diverse roles should be constantly aware that information that is clear and obvious to us is not necessarily so for families. degl and colleagues identified the need for guidance in communicating with parents (and with nurses) about clinical trials, noting that education about research underlies effective communication more generally. questions about “what should we talk about with families?” often concern me, as there is much we need to discuss during an infant’s hospitalization. how much information can be handled by a parent in the nicu? it may seem daunting to add discussions of research to the topics we already address with families in the nicu. here is a major lesson of “the culture of research communication . . .”: communicating about research brings benefits. we move beyond the old and well known informed consent, towards a broader approach that advocates for parental involvement and engagement of a dramatically different kind. there are myriad benefits. parents are empowered to parent. staff are united and integrated. barriers are broken. inclusion reigns over exclusion. final thoughts where do we go from here? as a relatively young discipline, neonatology has promising opportunities ahead. research is needed to support and enhance neonatal clinical practices. in recent years, we have witnessed how the increasing involvement of parents in their infant’s care improves the care we deliver in the nicu. neonatal research may be our next “port of entry” into the advancement of our collaboration with families. this path is being envisioned for us by others.1,2,5,7 imagine a culture of care that strives for more collaborative relationships among all the involved parties. recall many of the parents you have known; dream of their involvement in redesigning research documents, developing research materials, prioritizing research topics, supporting recruitment and collection of data, coauthoring scientific articles, taking part in research committees, co-presenting at professional meetings (see pyramid of complexity, presented in figure 1 in janvier at al., 2019).2 2022 • developmental observer • 17 envision inclusiveness and collaboration, both in caregiving and in research. there is a view that can elevate and respect aspects of exclusivity. at times, “exclusivity” implies refinement or the privilege of high quality. but degl and colleagues clarify the toll of exclusivity. at its root, exclusivity implies exclusion – denial of access. the future is already knocking at our doors. it is time. the exclusive golf club should be fully opened to all. acknowledgements: i am grateful to jeff alberts, phd, for his thoughtful and invested support in the editing and organization of my manuscript. and to ita litmanovitz, md, for suggesting thought-generating bibliography for my writing. references 1. degl j, ariagno rl, beauman s, eklund w, faro e, et al. the culture of research communication in neonatal intensive care units: key stakeholder perspectives. journal of perinatology; 2021, 41:826–2833. https://doi. org/10.1038/s41372-021-01220-5 2. janvier a, bourque cj, dahan s, robsonh k, barrington kj, on behalf of the partenariat famille (paf) team. integrating parents in neonatal and pediatric research. neonatology. 2019,115:283–291. doi: 10.1159/000492502 3. janvier a, farlow b. the ethics of neonatal research: an ethicist’s and a parents’ perspective. seminars in fetal & neonatal medicine. 2015, 20:436-441. doi:https://doi. org/10.1016/j.siny.2015.10.003 4. bourque cj, dahan s, mantha g, robson k, reichherzer m, janvier a. improving neonatal care with the help of veteran resource parents: an overview of current practices. seminars in fetal & neonatal medicine. 2018, 23:44-51. https://doi.org/10.1016/j. siny.2017.10.005 5. shen s, doyle-thomas k, beesley l, karmali a, williams l, tanel n, mcpherson ac. how and why should we engage parents as co-researchers in health research? a scoping review of current practices. health expectations. 2016, 20:543–554. doi: 10.1111/ hex.12490 6. persson pettersen m, persson a, klemming s. nidcap from a parent’s perspective. developmental observer. 2022, 15(1):1-3. doi:10.14434/do.v15i1.33785 7. gill m, bagshaw sm, mckenzie e, oxland p, oswell d, boulton d, niven dj, potestio ml, shklarov s, marlett n, stelfox ht; critical care strategic clinical network. patient and family member-led research in the intensive care unit: a novel approach to patientcentered research. plos one. 2016, 5;11(8):e0160947. doi: 10.1371/journal.pone.0160947. pmid: 27494396; pmcid: pmc4975402. nidcap federation international board of directors and staff 2021–2022 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: jpowlesl@uic.edu fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com maria lopez maestro, md, phd nidcap trainer hospital universitario 12 de octubre nidcap training center email: mariamaestro@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center email: heidelise.als@childrens.harvard. edu 18 • 2022 • developmental observer do preemie babies need their “cup of coffee” each day to improve feeding skills at breast or bottle when they are adjusted to 34 weeks gestation or above? caffeine is a common pharmacologic treatment for apnea, and for extremely premature infants who are born at 24, 25, 26 weeks gestation,1 continuing caffeine may be just what the doctor ordered. just like you and i need our coffee in the morning to function, does an extremely premature infant benefit from their “coffee” through their daily dose of caffeine through the adjusted age of 34-37 weeks? this is the time they are working on coordination of suck/swallow/breathe, improved intake and maintaining stable vital signs during feeding experiences at the breast or bottle. research shows that caffeine affects respiration in the following ways: increased minute ventilation, improved carbon dioxide sensitivity, decreased periodic breathing, and decreased hypoxic depression of breathing.2 if a baby maintains the intervention of caffeine while setting the foundation for feeding skills, would they be able to maintain stable vital signs, improve organization of behavior, and improve intake in a shorter amount of time? therefore, decreasing time spent in the hospital? the literature also shows that caffeine is safe and effective, but the therapeutic window for use has not been established. eichenwald3 suggests that a baby be free of apnea/bradycardia events off positive pressure for five to seven days or at 33-34 weeks pma. but could the baby continue caffeine support while working on suck/swallow/breathe coordination at breast and/or bottle, which may begin around 34 weeks pma? if babies are given the support of caffeine during this time, when an additional activity, such as breast and bottle feeding, is being presented, it may improve the positive experience of feeding and lead to improved intake and the main goal of full oral feeding for discharge home. the transition to oral feeding requires that a baby demonstrates physiological stability. to assist the infant, we need to understand how they maintain optimal oxygenation during oral feeding and how they can self-regulate their oxygen status.4 swallowing momentarily interrupts breathing, which requires work for organization with the suck/swallow/ breathe pattern. could caffeine support the organization needed to achieve full oral feeds more quickly? many authors discuss the use of caffeine with suggestions to be proactive, rather than reactive to apnea episodes at rest and during oral feeds. some suggest that caffeine may be needed longer for the extremely premature infant to support the developing lung. it is discussed that the common practice is to discontinue caffeine between the 33-34 pma. it was noted that apnea still occurs and is not trivial in the 35-39 pma. it is suggested that continuing caffeine past 35 weeks is a possible treatment plan that could have a significant clinical impact. however, physicians seem reluctant to keep an infant on caffeine past 34 weeks with concern that it may delay discharge. it may be possible that staying on caffeine longer could in fact, speed up discharge. if de-saturations are closely observed and recorded, the need to extend the use of caffeine will become does caffeine use support suck/swallow/breathe coordination at breast and bottle, and lead to an earlier discharge? brenda takata, otr/l, mha, swc, nlp emanate health queen of the valley hospital, los angles, california doi: 10.14434/do.v15i2.34362 infant bottle feeding. us ed w ith p er m is si on 2022 • developmental observer • 19 evident. if the medication was not discontinued until three to five days post last incident of a desaturation, the baby has support while feeding, and could in fact discharge from the unit sooner avoiding the need to prolong hospitalization to monitor for desaturations to ensure that the baby is stable. caffeine’s favorable effect on cardiorespiratory physiology in stabilizing systemic and cerebral hemodynamics and its capacity to mitigate hypoxic respiratory depression may play a part in neuroprotection.5 kumar and lipshultz5 suggest that the therapeutic window for caffeine will need continued research to understand the favorable outcomes that may be achieved for premature infants. dabin2 discussed the wide variation in discontinuing caffeine, and the need for more studies to assist with the balance of avoiding apnea episodes and delaying discharge if caffeine is not discontinued soon enough. along my journey as an occupational therapist in the nicu, i had the privilege of working with two wonderful premature babies born at 24.6 weeks gestation and 24.4 weeks gestation. they were similar weight, 715 grams, and 760 grams. both needed oxygen support and caffeine support. my focus was on the caffeine support and how it may assist with improved success with breast and bottle feeding. baby a, was born at 24.6 weeks gestation and had caffeine discontinued at 36.3 weeks. at that time, we only expected the baby to attempt to bottle feed every other feeding due to respiratory effort made during feeds, and difficulty with completing his feeds. he always seemed to need to “catch his breath” and would take 35-70% of his feeds, but remember, he was only trying to nipple feed every other feeding. he was too tired the rest of the time. baby b, was born at 24.4 weeks gestation and had the caffeine discontinued at 37.6 weeks gestation. baby b was able to take advantage of the benefits of caffeine for 10 days longer than baby a. at the time that the caffeine was discontinued for baby b, he was consistently taking above 50% of his feeds and was bottle feeding on a cue based schedule and showing an appropriate coordination of suck/swallow/breathe. baby a was discharged home at 42.5 weeks and had a gastrostomy tube placed due to the inability to maintain enough energy to complete oral feeds. baby b was discharged home at 40.5 weeks, taking full oral feeds. when looking back at the journeys of these two babies, it may have been advantageous for baby a to continue caffeine longer as he continued to improve with breast and bottle feeding skills. it may have assisted him to have a better foundation for coordinating suck/swallow/ breathe during feeding if the discontinuation of caffeine was considered when the baby was above 35 weeks corrected age, on cue based feeds, and taking 50% or more of each feeding orally. and, most importantly, continuing caffeine if the baby had experienced any desaturations or bradycardias in the last three to five days. further studies would benefit outcomes and help to establish guidelines for using caffeine and considering feeding skills and intake at the time of discontinuing the support that caffeine offers.6 a solution may be in correctly and efficiently charting and recognizing a desaturation and/or bradycardia and keeping a close eye on the baby’s stability when nipple feeding and at rest. references: 1. abdel-hady h, nasef n, shabaan ae, nour i. caffeine therapy in preterm infants. world j clin pediatr. 2015, 4(4):81-93. doi: 10.5409/wjcp.v4.i4.81. 2. ji d, smith pb, clark r, zimmerman k, laughon m, ku l, greenberg r. wide variation in caffeine discontinuation timing in premature infants. journal of perinatology, 2020, 40, 288-293. doi: 10.1038/s41372019-0561-0. 3. eichenwald ec: committee on fetus and newborn, american academy of pediatrics. apnea of prematurity. pediatrics. 2016, 137(1). doi: 10.1542/peds.2015-3757. 4. thoyre sm, carlson jr. preterm infants’ behavioural indicators of oxygen decline during bottle feeding. journal of advanced nursing. 2003, 43(6):631-41. doi: 10.1046/j.1365-2648.2003.02762.x. 5. kumar vhs, lipshultz se. caffeine and clinical outcomes in premature neonates. children (basel). 2019 oct 24;6(11):118. doi: 10.3390/children6110118.  6. moschino l, zivanovic s, hartley c, trevisanuto d, baraldi e, roehr cc. caffeine in preterm infants: where are we in 2020? erj open research. 2020, 6(1):003302019. doi: 10.1183/23120541.00330-2019. “swallowing momentarily interrupts breathing, which requires work for organization with the suck/swallow/ breathe pattern.” thank you for the new look issue of the developmental observer. i particularly enjoyed the first article “nidcap from a parent’s perspective” it’s incredible to hear that baby benjamin was a week old before he was even put in his bed! and the way the nicu/health system is set up to have them progress to a family room and the neonatal home care is inspirational. – catherine piasini clinical nurse specialist australasian nidcap training centre letters to the editor (continued from p.11) 20 • 2022 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e doi:10.14434/do.v15i2.34368 french nidcap center, brest the university hospital of brest is in the brittany region of france, in the westernmost department of the finistère. there are approximately 2200 births each year in the maternity department, which is the only level 3 maternity department that can receive children and newborns needing critical care including extremely preterm infants. the neonatal and pediatric intensive care unit of brest has 12 beds open to children from 0 to 15 years of age with medical or surgical needs. a large majority of admissions are premature newborns. approximately 400 newborns are admitted each year in our different units, including about 100 very preterm babies born between 24 and 32 weeks gestational age. our intermediate and special care nursery has a capacity of 18 beds divided into two sections. six intensive care beds and twelve intermediate care beds. since 2007, six intermediate care beds have been relocated to the maternity unit. when the nursery was established, we named it ‘koala unit’ as it is not a true ‘kangaroo care’ service. indeed, even if the parents are close to their baby, they do not perform skin-to-skin contact 24 hours a day. the road to nidcap the arrival of nidcap in brest was a process and great collective adventure. in the 1990s due to advances in perinatal medicine, the mortality of preterm infants, especially those with a gestational age of less than 30 weeks, decreased significantly. these infants were hospitalized for several weeks in the nicu. during this hospitalization, preterm infants were cared for in an inadequate environment for the harmonious development of the brain – sudden separation from their parents, noise, pain, unusual positions, frequent handling, and early, excessive, and often inappropriate stimulation. we were faced with increasingly important problems, for which we did not have satisfactory solutions that were applicable to all infants. infants were uncomfortable, and sometimes stressed and in pain. pain was diagnosed on the basis of the infant’s behavior, and it was often difficult to determine its severity and differentiate it from stress. respiratory morbidities, such as bronchopulmonary dysplasia leading to prolonged ventilatory support, were difficult for the infant, their family, and for caregivers. increasingly, frequent questions arose within the medical and paramedical team about the medium and long-term future of these very premature infants. what would be the impact of this nidcap brest team sylvie minguy (rn nidcap trainer brest france) nidcap trainer 2022 • developmental observer • 21 environment on the developing brain? what would be their achievements and at what pace? what were their chances of getting into school? their psychological future? their behavior in everyday life? families were present in the nicu more often but were finding it difficult to know their infant. the hospital pediatricians or private doctors who followed these former premature babies reported to the hospital teams that the parents absolutely did not know their infant upon discharge from neonatology and intensive care. it was as if the parents had never been involved in the care and development of their baby during hospitalization. various programs were set up at that time within the hospital and the intensive care unit to improve the care of babies and their families. skin-to-skin techniques were used, even for the mechanically ventilated children. in 1993, a study on noise, conducted by nurses, led to a change in practice that reduced the noise level in the neonatal unit. between 1993 and 1998, instructions for additional examinations, in particular biological examinations, fell by 70% in the neonatology unit. this process of change led to a reduction in orders of systematic, painful, and non-essential examinations, all accomplished without compromising the safety of the infant. in 1997, there was a lot of work done on pain within the entire pediatric department of the hospital. no invasive procedure such as intubation, placement of a chest tube, placement of a catheter was performed without analgesic cover. unfortunately, this coverage was not always completely effective. between 1996 and 1998, 80% of the department’s nursing staff benefited from training in the sensory awakening of full-term newborns and in massage techniques. the caregivers thought they could relieve the infants with massages but quickly realized that some infants did not tolerate massage at all. parents were increasingly present in the service. they were admitted to the units, but they were excluded at certain times, during rounds, whether medical or nursing, and especially during care. they remained mere visitors. it was difficult for families to find their place with their infants due to a lack of autonomy, but also due to a lack of privacy. parent/infant contact was difficult and only possible when the caregiver wanted it. the siblings or the grandparents could visit the baby only when the infant had stayed in the unit for a long time. developmental care techniques were used only after medical stabilization of the infant. there were different attitudes between different caregivers and between different units. the arrival of nidcap all these reflections and the desire to change our practices fostered the implementation of nidcap. it appeared to us that rather than focusing and acting on an isolated environmental factor, a more global modification of the structures and organization of care was necessary. we were missing the overarching theme which was determined ultimately thanks to an internet search carried out by dr jacques sizun in 1996. one night while on call, he read the word ‘nidcap’ for the first time and it suddenly seemed obvious to him: ‘if it exists, that’s really what we need!’ from that night on everything moved very quickly. we needed to inform the teams, find funding, convince the hospital directors, find a trainer in the united states. dr jacques sizun, dr nathalie ratynski and the nursing staff director at the time, ms catherine mambrini, flew to denver, colorado to participate in a nidcap training session conducted by dr joy browne. they returned to brest a few days later with a new perspective on the infants in the unit. several meetings later, five nurses came to support the team. in just over two years, thanks to joy’s guidance, these seven professionals became nidcap certified (five nurses and two physicians). jacques thought that the work stopped there, in reality it was only beginning. ‘the child and his parents are at the center of care. caregivers gravitate around.’ now that the theory had been absorbed and understood by the core team in the unit, it was time to disseminate the program across the services and influence change within the system without being too “pushy”! little by little the premises, the realization and the organization of the care, the relationships with the infants, with the parents, and between professionals had effected a real paradigm shift and inspired the establishment of a new philosophy of care: quickly, the demand for the formation of new nidcap training centers appeared. the french nidcap center, brest opened in 2004 directed by dr jacques sizun and co-directed “we were missing the overarching theme which was determined ultimately thanks to an internet search carried out by dr jacques sizun in 1996. one night while on call, he read the word ‘nidcap’ for the first time and it suddenly seemed obvious to him: ‘if it exists, that’s really what we need!’” 22 • 2022 • developmental observer by dr nathalie ratynski, who became the first french nidcap trainer. observations in the unit were conducted mainly by nathalie and periodically by other trained nurses. in 2005, a nurse coordinator position in developmental care was created. from then on, all infants born before 33 weeks and their parents were able to benefit from individualized nidcap monitoring. this position makes it possible to maintain cohesion between the numerous services, but also to establish links with external services specializing in the care of vulnerable infants. that same year, dr heidelise als spent a few days in brest to officially inaugurate the first french training center. outstanding! the program continued to promote nidcap in brest and throughout france and europe. a training center opened in brussels. in 2007, the french nidcap center, brest hosted the 18th annual nidcap trainers meeting in combrit, brittany, france and invited professor sunny anand, an internationally renowned neonatologist for his research work on neonatal pain. in 2011, the first french-speaking nidcap days were organized in brest. since then, every year, these sessions take place in one of the french or belgian centers with staff trained in nidcap and in the past few years for those with fine 2. these allow the opportunity for beautiful reflections and reunions around a different theme each year. nidcap progress in brest continued with the training of additional nidcap professionals. at the beginning of 2013, i, sylvie minguy, became the second nidcap trainer, guided by agneta kleberg and deborah buehler. over time, the two trainers expanded their training efforts and obtained authorization to provide new training such as fine 2 and the soffi program. a little later, jacques sizun and isabelle olivard became nbo trainers with the help of yvette blanchard. these three training programs are very successful among french teams. expansion of nidcap as the demand for nidcap training grew, the second french nidcap training center opened its doors in 2017 in toulouse. in january 2020, jacques sizun and nathalie ratynski left brest hospital to join toulouse hospital. dr jean-michel roué took over the directorship of french nidcap center, brest which now has six nidcap professionals, two of whom are working full time in the unit. this time is shared between the various trainings, the nidcap follow-up of children and their families and the coordination with the outpatient follow-up services for vulnerable children. the training of new nidcap professionals is being planned. we work in close collaboration with the french nidcap center, toulouse and organize regular meetings. we distribute the training according to requests, availability, and the geographical location of the requesting centers. there is a frequent exchange between trainers and trainers in training. indeed, two new nidcap trainers guided by delphine druart will be operational in france in the near future. although it has not always been easy, over the past twenty years the program has continued to grow. we have evolved enormously and integrated all the techniques of developmental care into the organization of care, always keeping in mind to place the infant and his family at the heart of the system. it seems to me that if, at the beginning of nidcap implementation, we had been told that system-wide changes would take place during these years, we would not have believed it! achievements among many, two great moments enriched the process of setting up the nidcap program in brest and provided even greater motivation to all the teams: after several months of hard work in 2011, the intensive care and neonatology departments obtained nidcap nursteam of resuscitation and neonatology caregivers at the 20th anniversary celebration of nidcap in brest. parents and former premature children came to share their stories and the impact of nidcap on their hospitalization. 2022 • developmental observer • 23 ery certification. this work carried out by all the units of the women-mothers-children department of the hospital has brought about a common dynamic and made it possible to continue the dissemination of the nidcap philosophy to all the units. during the nidcap nursery certification visit in december 2010, the expert site visitors, karen smith, msn, james helm, phd and roger sheldon, md pointed out the strengths of the unit. they highlighted: • the quality of care provided to newborns: one of the best among all the units visited by them. • the quality of relationships between caregivers, infants, and families with mutual respect • single room architecture. another great moment was the big event in 2018 organized to celebrate the 20th anniversary of the implementation of the nidcap program. supported by the hospital directors’ board, we were able to organize two memorable days of events for all the teams. the first day was devoted to children and their families with make-up workshops, clown shows, a music concert, and a gigantic snack. it was an opportunity for parents, children, and professionals to meet and celebrate. the demand was so great, we were unable to accommodate everyone. the second day brought together professionals from different units and peripheral hospitals in the region, as well as many parents and representatives of the “sos préma” parents’ association with whom we have been working closely for 15 years. parents and former premature children came to share their stories and the impact of nidcap on their hospitalization. among them, morgane, born at 25 weeks, and her mother, came to tell their journey, sometimes difficult but so moving, from a little girl born at 25 weeks to a brilliant student in foreign languages at the university. morgane and her family were featured in my “advanced practicum” during my nidcap training 20 years earlier! during these days, we also had the chance to welcome joy browne for a conference on the role of parents in neonatology services. it was a real joy to see joy back in our department! in addition, several nurses and doctors from the resuscitation and neonatology units spoke to the evolution of their daily work with children and their families. we said to each other as we left “rendez-vous for the thirty year anniversary!!” just one final story… on may 1, 2022, benoit, the father of gabin who was born in brest in may 2020 at 26 weeks gestation, sailed across the atlantic ocean in an amateur transatlantic race, ‘cap martinique’. all skippers sailed under the logos and colors of a cause near and dear to their hearts. gabin’s father chose to sail under the colors of nidcap in recognition of the care of his baby, but also of his family during his hospitalization! the nfi sent him the logo that was displayed on the sails of his boat throughout the crossing, from la trinité-sur-mer, brittany, france to fortde-france, martinique. thus, the nidcap adventure continues for all! i was present for the start of the race on may 1st in la trinité-sur-mer. here are some photos of the event. 24 • 2022 • developmental observer rwanda is one of the smallest countries in africa, bordered by uganda, burundi, tanzania and democratic republic of congo. it is known as the land of a thousand hills with a population of 13,477,805. it has been 27 years since rwanda came out of one of the most devastating genocides in world history. after the 1994 genocide against tutsi, rwanda started from scratch to rebuild the health system destroyed. the strengthening of the health system in rwanda is a foundation for socio-economic support and the cornerstone of the country’s renewal. the rwandan health sector is a pyramidal structure and consists of three levels: primary, secondary and tertiary (as shown in the diagram below). rwanda currently operates a well-functioning, decentralized public healthcare service system. it is comprised of 1700 health posts, 500 health centers, 38 district hospitals, four provincial hospitals and eight referral hospitals, including two teaching hospitals. rwanda also has a vibrant private health services sector, comprised of two general hospitals, two eye specialty hospitals, 50 clinics and polyclinics, eight dental clinics, four eye clinics, and 134 dispensaries. all public facilities transfer the patients following the pyramidal structure seen above. private facilities may refer to any level of the private or public health system. referrals depend on the condition and needs of the patient. among 50 hospitals of secondary and tertiary levels, 49 have newborn intensive care units. they follow a referral flow depending on the health conditions of the newborn. in rwanda, 12% of babies are born prematurely. newborn mortality rate is 16 per 1000 live births and 30% of newborn deaths are caused by preterm birth complications. rwanda has worked to reduce neonatal mortality through newborn survival initiatives, with a national neonatal care protocol and the establishment of neonatal care units (ncus) in every public hospital to care for sick and small newborns. through the efforts to improve care for sick and small newborns, more preterm and/or low birth weight (lbw) babies are surviving into childhood, yet there is poor health, nutrition, and developmental outcomes among children born preterm and lbw at one to three years in rural rwanda. high rates of developmental delay (52.6%) exist for infants. this is most significant among children born prematurely and/or lbw (67.5%) when compared to children born at term ages at age two to three years (51.1%).1 developmental care the ministry of health and partners in health have created the pediatric development clinic with support from unicef and specialists from boston children’s hospital. the interdisciplinary program is intended to improve health outcomes for babies at risk of death or developmental delays. it is the first program of its kind in rwanda. the clinic started in april 2014 in rwinkwavu district hospital and has since expanded to four districts: kayonza, global perspective on developmental care rwanda patrick manibaho, rm nidcap professional in training, ruhengeri referral hospital, musanze-rwanda patrick manibaho, rm, marie louise uwimana, rm, and jean damascene ndahayo, md overview of rwanda decentralized health care system doi:10.14434/do.v15i2.34367 2022 • developmental observer • 25 kirehe, rutsiro and musanze. the clinic allows health care providers to follow infants after they go home, through regular clinic appointments and community-based support. the program features a weekly nurse-led clinic at health facilities, social supports such as food and transportation money for vulnerable families, and training for staff members in caring for high-risk infants through simple interventions. high-risk families are identified by social workers and receive home visits and community-based support as well. the program also is linked with electronic medical records systems to improve care and tracking of patients’ outcomes. nidcap in rwanda to bring nidcap into rwanda, heidelise als, phd (national nidcap training center, boston) collaborated with two experienced nidcap trainers, natalie wetzel, rn (nidcap germany, training center tübingen) and maria lópez maestro, md (hospital universitario 12 de octubre nidcap training center, spain). these nidcap trainers have started to train our team at ruhengeri referral hospital (rrh). given the travel restrictions due to the sarscovid-2 pandemic, the training is being conducted online. at this time, our team of nidcap professionals in training at rrh consist of two registered midwives (patrick manibaho, rm, marie louise uwimana, rm) and two medical doctors (deborah makasi, md and jean damascene ndahayo, md). zoom meetings, recorded videos and bedside live streaming during observation are the preferred ways to conduct successful training. workshops are scheduled based on availability of trainers and trainees, often twice a month. the nidcap observation write-ups are sent via email for feedback. a reflective session occurs via zoom for review of the nidcap reports. the nidcap observation is conducted in collaboration with nicu staff and family members. healthcare professionals communicate in english. however, the communication with family members is done in kinyarwanda, the main language spoken in the community. the team is looking forward to achieving certifications as nidcap professionals. our longterm plan is to continue our training to become nidcap trainers-in-training and ultimately have a training center in rwanda. our goal is to train our fellow caregivers in hospitals across the country. our group represents the first sub-saharan african hospital to receive nidcap training. references: 1. ahishakiye a, abimana m c, beck k, miller, a c, betancourt t s, magge h, mutaganzwa c, kirk c . developmental outcomes of preterm and low birth weight toddlers and term peers in rwanda. annals of global health. 2019; 85 (1): 147.  doi: 10.5334/aogh.2629. deborah makasi, md issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2022. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or send directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 26 • 2022 • developmental observer n i d c a p o n t h e w e b nidcap training centers – facebook pages the promotion of nidcap on facebook continues with new pages being added. over the past few months, we have seen these pages promote conferences, seminars and support sessions, helpful information, new publications, achievements, and celebrations of nidcap. please visit these sites and explore other information and achievements to help you celebrate nidcap. nidcap blog nidcap.org https://www.facebook.com/nidcapaustralia https://www.facebook.com/nidcap.france https://www.facebook.com/nidcap https://www.facebook.com/nidcapporto.s.joao https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ 2022 • developmental observer • 27 n i d c a p o n t h e w e b the nfi nidcap blog offers observations from many different perspectives on nidcap and its implementation, such as nidcap and apib training, nursery certification, the science behind the approach, the family experience with nidcap, the nfi, and much more. we encourage you to visit the nidcap blog and to leave comments for our bloggers and our nidcap community in general. if interested in becoming a guest blogger please contact sandra kosta at sandra.kosta@nidcap.org. nidcap blog nidcap.org http://nidcap.org/blog https://www.facebook.com/search/posts?q=nidcap%20sweden&filters=eyjyzwnlbnrfcg9zdhm6mci6intcim5hbwvcijpcinjly2vudf9wb3n0c1wilfwiyxjnc1wiolwixcj9in0%3d https://www.facebook.com/groups/3103556629927874 https://www.facebook.com/search/posts?q=sophia%20nidcap%20training%20centrum&filters=eyjyzwnlbnrfcg9zdhm6mci6intcim5hbwvcijpcinjly2vudf9wb3n0c1wilfwiyxjnc1wiolwixcj9in0%3d https://www.facebook.com/nidcap.lundmalmo https://nidcap.org/blog/ https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ 28 • 2022 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: annette villaverde email: annette.villaverde@commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: heidelise als, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: linda.lacina@cchmc.org south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: angela casey, rn, bn and kaye spence, am, mn contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: majken grund nielsen, rn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med.uni-tuebingen.de 2022 • developmental observer • 29 n i d c a p t r a i n i n g c e n t e r s italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail.com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sant joan de déu barcelona nidcap trainer center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: bjorn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd co-director: gillian kennedy, obe, msc email: gillian.kennedy4@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 10 • 2025 • developmental observer the division of neonatology, at the university clinic for children and adolescent medicine in salzburg has been striving since the 1970s to stay ahead of its time through innovative medical and nursing measures. from the very beginning, a core team started to work on implementing different basic strategies to support prematurely born babies and their families. nidcap training center in development the development of the amadea nidcap training center in salzburg began back in 2000, when dr. erna hattinger-jürgenssen heard professor heidelise als speak at a conference in heidelberg. the nidcap approach presented by dr. als, was for dr. hattinger-jürgenssen the missing piece required to optimize the care for all preterm and newborn babies on our ward. on reflection, it became clear that the concept of care that we considered standard care had not taken into account something important: the child as an individual personality with great development potential. in the meantime, the planning of a new parent-child center (ebz) was gradually taking shape, so everything seemed to be coming together at the right time and place. however, it was a long journey from the idea to implementation. as it was a revolutionary concept, everyone involved had to support the model. the goal was to plan an environment characterized by architectural forms, surface materials, wall design as well as light and color choice to minimize stress, for the babies, families and staff. developmentally supportive and family-centered care in this environment would promote well-being, familiarity and intimacy. however, our efforts remain an ongoing process where we question practices, adjust to scientific findings and monitor our outcomes. to promote this model, in 2010, teresa garzuly-rieser rn and johann binter rn started their nidcap training with dr. nikk conneman from the sophia nidcap training center. this was after the neonatology department moved into a new, developmentally supportive environment (the ebz), with eight two-bedded rooms and five family and child rooms. the ward was now situated on the same floor as the delivery room and the maternity ward and offered four additional rooms for parents to stay close to their infants. the newborn intensive care unit in salzburg has 18 beds for preterm infants and newborns, 12 intensive care beds, and six intermediate care beds. on-going nidcap training in 2013 and 2015, five colleagues, silvia wörndle rn, barbara perner rn, verena linecker rn, dr. erna hattinger-jürgenssen and dr. silke häusler started their nidcap training and the nidcap team grew. in 2013, johann binter rn and teresa garzuly-rieser rn were certified as nidcap professionals. a part-time position n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e amadea nidcap training center salzburg, austria teresa garzuly-rieser, rn, nidcap trainer, amadea nidcap training center salzburg doi:10.14434/do.v18i3.42180 parent-child center in salzburg 2025 • developmental observer • 11 was dedicated to nidcap, so the nidcap implementation process started and was strongly supported through the amazing team and leadership. implementation is still an ongoing process; with every infant and their family we learn and grow what it means to implement individualized developmentally supportive pathways. the whole team continues to develop their knowledge and skills in infant family-centered developmental care (ifcdc) with programs such as fine 1 and 2 (family and infant neurodevelopmental education) to improve the support for infants and their families. fine 1 and 2 are going to be an obligatory part of the basic development and training program for staff in the unit. the aim is to reach out to all the wards in the clinic (salk – salzburger landeskliniken) who care for newborns to be trained in this approach. it calls for a rethink and a reorientation in the traditional practices and understanding of the profession. the infant in the context of their family would now be the focus of professional action. the change from task-oriented to relationship-oriented care fundamentally changes the understanding of the profession and requires support in implementation. outside of daily work, team-building processes helped us to get to know each other better, to think constructively about changes and to master tasks together. nidcap trainers in training in 2018, teresa and johann were able to embark on a new nidcap level; they started the nidcap trainer-in-training process. we had the honor to welcome professor heidelise als (nidcap and apib senior master trainer) and nikk conneman, md (nidcap and apib senior trainer) as our teachers, mentors and inspirers. dr. conneman, as our trainer, always helped us to take a new perspective, to think more deeply about ourselves, and above all not to stand still and not to lose focus even in difficult times. even the pandemic could not stop our aim to deepen our knowledge and understanding of the preterm infants’ behavior, to improve the wellbeing and the outcomes for the infants and families in our care. all the online training was challenging but brought us closer together in a different way and showed us new ways of communication against all spatial and physical distances. the whole nidcap path would not have been possible without the huge support of our head nurse and training center director mrs. elke gruber rn, erna hattinger-jürgenssen md and the hospital leadership. mrs. gruber is the main force behind the nidcap work with trust and support on-going. supporting the training process hosting an annual symposium – “the salzburger frühlingssymposium“, which was launched through elke gruber, head nurse and johann binter rn, helped us to raise funds for further education and strengthen the awareness for developmental care in austria and beyond our borders in germany and switzerland. there were 80 registrants in person with an additional 300 online. on march 20, 2025, world nidcap day, we were able to host the “8th salzburger frühlingssymposium“ promoting developmentally supportive care. this was attended by a lot of interested people, both live and online. monique oude reimer from sophia nidcap & apib training center greatly contributed to our program. the amadea nidcap training center the amadea nidcap training center is the first nidcap training center in austria. it was certified in 2024, and will offer nidcap professional education. our team also offers fine 1 and 2 courses all over austria. we are looking forward to collaborating with other units and hospitals in the future and share our vision to support and empower families on one hand and strengthen the multidisciplinary teams on the other hand. nidcap has brought far reaching changes in how we think as a team and interact with premature and newborn babies and their families, furthermore it has been a journey with ups and downs, growing and letting go. we gained new people and had to say goodbye to some but today we can be proud of ourselves. we no longer send babies home to their par ents, instead our families go home feeling strengthened as a family despite or because of their stay in neonatology salzburg. our daily nidcap work on the ward is strongly supported through a multidisciplinary team, gruber elke rn, silvia wörndle rn, barbara perner rn, verena linecker rn, apl. prof. martin wald, dr. edda hofstätter, dr. franziska danklthieme, dr. silke häusler, dr. erna hattingerjürgenssen, also physiotherapists, speech therapists, lactation consultants, case and care managers, social workers and psychologists contribute their valuable work. thank you to all the work of each one of the neonatology salzburg team. we now have parents who cuddle with their children, feel recognized and allowed to be competent and be families even though the start in life was different than expected. amadea team from left teresa garzuly-rieser rn, dr. edda hofstätter, elke gruber rn, dr. erna hattinger, silvia wörndle rn, apl. prof. martin wald 10 • 2024 • developmental observer p r o f i l e o f a n i d c a p l e a d e r heidelise als has profoundly influenced my professional and personal life. thank you for being my mentor and inspiration … "we are all connected; we mutually support, teach, learn from, and enrich one another" heidelise als i was born in the beautiful city of porto, portugal, a city steeped in history and culture. however, my early years were spent outside of porto and were incredibly rich and varied in experiences as i traversed the globe alongside my family. my “globetrotting journey” was a result of my father's career as a military officer, which took my family to different places, allowing us contact with diverse cultures, languages, and traditions. this period of my childhood left a lasting imprint on me and shaped my future perspective on life. it has not only broadened my horizons but also shaped my values, emphasizing the importance of empathy, understanding, and interconnectedness in our global community. i graduated in medicine at the university of porto and began working as a doctor at são joão university hospital. in my professional journey as a doctor, this multicultural foundation has proven to be an invaluable asset. it has enhanced my ability to collaborate and work in diverse environments. so as a young paediatrician, i had the curiosity and desire for varied experiences that led me to have opportunities beyond the familiar confines of porto as i undertook several months of hospital internships in london and paris. like any young doctor, i was drawn to state-of-the-art technologies that could enhance patient care. the latest advancements on mechanical ventilation captivated my attention in the first years of my career. my introduction to nidcap in the nineties, attending the french paediatric society meeting in reims, france, i chanced upon a workshop presented by an enthusiastic team from the university hospital of brest, led by professor jacques sizun. the topic presented, new approach to caring for infants, promised a shift in perspective toward understanding the language and behaviour of babies, with a focus on their development and family, caught my interest. this moment was really a “touchpoint” and marked a true turning point in my professional and personal journey. it challenged conventional medical approaches by placing a spotlight on infants’ behaviour and families, understanding of the infant's needs, and involving the family in the care process. reading infant behaviours was really a new concept for me, and this paradigm shift made a profound change in my approach to neonatology. embracing the principles introduced by the brest team, i began to view each newborn not just as a medical case but as a unique individual with their own language. the emphasis on family involvement also became a cornerstone, recognizing that the well-being of the infant is linked to the support and understanding provided by their family. this new philosophy of care not only revolutionized my professional practice in neonatology but also had a strong effect in my personal life. bringing nidcap to portugal as i continue my journey as a neonatologist, the lessons learned in france remain embedded in my practice. the fusion of cutting-edge technology with a compassionate, family-centered approach has become the hallmark of my commitment to the well-being and development of every newborn under my care. with madalena pacheco rn, a young neonatal nurse and now the head nurse of our nicu, we shared a common enthusiasm for enhancing our understanding of nidcap principles. together, and with the support from hercília guimarães, professor of pediatrics and chief of department of pediatrics faculty of medicine of porto university, neonatology service director, we began our nidcap journey in portugal. we successfully secured a scholarship from the calouste gulbenkian foundation to fund nidcap training which fatima clemente md senior consultant in neonatology in são joão university hospital são joão nidcap center director and trainer member of the nfi board of directors doi:10.14434/do.v17i2.38134 fatima clemente with nidcap founder heidelise als 2024 • developmental observer • 11 allowed our team to travel to boston and had the privilege to meet professor heidelise als and dr nikk conneman. in the year 2008, i was certified as a nidcap professional along with madalena pacheco rn, carla castro rn and ligia silva rn, neonatal nurse specialists and the first nidcap nurses certified in portugal. our team has expanded, now with eight nidcap professionals and six more in training, bringing together dedicated professionals who share our passion for enhancing the well-being of newborns and their families. with the support of dr graciela basso, who was crucial in the implementation and integration of nidcap care at the neonatology unit level and at the hospital system level, and even at the national level in portugal. with her vast experience and knowledge, she supported the training of our team and its expansion. we realized our dream in 2015: the inauguration of the são joão nidcap training center. this center became a place where our team's commitment to improving care for infants and families in portugal could develop. each member brought a unique set of skills and dedication to the table, contributing to a collaborative and supportive environment focused on the nidcap approach to newborn care. the future for developmental care and nidcap our shared team vision extended beyond nidcap professional certification – it was about continuous improvement in the care provided to newborns and their families. so, for the past few years, são joão nidcap training center has an important goal: the education in nidcap foundation courses like foundation for infant neurodevelopmental education (fine), providing the pathway for nidcap training and certification. in our portuguese experience with the multidisciplinary training of many professionals in the nicu team with fine training, it is the fundamental step to establish the foundations for nidcap training. it's essential for the team to "speak" the same language and to understand the process of a changing care philosophy under the synactive theory. through this approach, we intend to meet the evolving needs of the portuguese hospitals and nicu professionals. in the last three years with the financial support of the portuguese parent association, we have trained on developmental care and nidcap foundation with fine 1 and 2 more than 700 nicu professionals across all portugal, 17% of them are neonatologists. this multidisciplinary participation has an important impact on neonatal care in portugal, emphasizing the importance of individualized, family-centred approaches. another of our goals for the future is to initiate basic training in africa in portuguese-speaking countries: angola, mozambique, guinee-bissau, and cabo verde. the online training has opened a window of opportunity for decreased costs and the ability to reach more distant hospitals. family-centered care is not a reality in hospitals in africa. the need for families to be in the units 24/24h, to support breastfeeding, kangaroo care, and to support parents in caregiving, is crucial for the survival of premature babies. we intend to integrate developmental care through portugal's exchange programs that already exist with these countries. rewarding experiences my most successful professional experience is working with professionals from different portuguese nicus and sharing their journey in learning the language of the infant, caring for the infant, and partnering with families. it is a true privilege for me! each time, i am grateful to be able to work with excellent and motivated professionals who aim to improve their skills to meet the needs of families and their babies. in a period where we are experiencing a global crisis in national healthcare systems, where hospital resources are often directed towards other more technical aspects, it is surprising that we have so many individual requests for fine courses and nidcap training. this demonstrates the recognition of the importance of developmental care and the need for ongoing skill development to meet the demands of families and infants in increasingly complex situations like cardiac and surgical pathologies that often require specialized care but also special attention to developmental issues due to the complexity of their conditions to optimize outcomes. working with hospitalized infants can be challenging yet immensely rewarding. effective communication and collaboration among multidisciplinary teams is essential. therefore, as we work together providing the nidcap approach to comprehensive care, the individual needs of each infant and family are considered. it is not an easy task but remains one of our goals in our nicu in porto. advice for those doing nidcap training: • be open-minded! think of neonatal care from a global perspective and be ready to learn new concepts. you will move from a traditional task orientated model of care to one built on relationships that uses a reflective process. nidcap emphasizes an individualized approach to newborn care, it can be really challenging, but it will certainly be very rewarding. • build relationships! nidcap training encourages positive relationships, collaboration and communication among care providers, families, and other stakeholders such as scientific societies, parents associations and universities involved in the newborn's care. • seek mentorship! mentorship from your trainer but also from experienced nidcap professionals and other trainees. they can provide guidance, feedback, and support as you navigate the complexities of implementing nidcap principles in practice. • continuously reflect on your practice! seek opportunities for improvement. you are not alone on this journey. you are part of a global community that is organized within the nidcap federation international. you can participate 12 • 2024 • developmental observer in different nfi committees. you can share your skills and experiences and be part of workgroups, supporting the growth of our organization. take the initiative and contact the chairs of each committee. you'll find the contacts on the nfi website. • and finally, be patient with yourself! implementing nidcap care takes time and practice. be patient with yourself as you develop your skills and understanding. remember that every interaction with a newborn is an opportunity for growth and learning. remember it is a journey, and it requires time, but also dynamism and determination. build a team that supports each other. our sponsors dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. sponsor of the nfi and the 34th annual nidcap trainers meeting. dandle•lion medical, the leader in neurodevelopmental care, makes it easy to provide consistent, effective, evidence-based care for hospitalized babies. our patented positioning aids provide a womb-like experience while our education programs meet ongoing clinical needs. becoming part of our dandy pride of lions means providing the best care for your patients, support for your clinicians, and value for your organization. sponsor of the 34th annual nidcap trainers meeting issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2024. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 18 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 background retinopathy of prematurity (rop) examinations frequently occur in the newborn intensive care unit (nicu). ophthalmologists conduct these critical exams to screen, diagnose, and monitor the progression of rop, with intervention required in severe cases. these exams can be highly stressful and potentially traumatic for critically ill infants and distressing for caregivers to witness. effective management of the infants’ stress and discomfort during these procedures is crucial for their overall development and recovery. the author is part of an interdisciplinary team composed of ophthalmologists, developmental nurses, music therapists, child life specialists, and integrative care nurses. over the past four years, this team has developed, tested, and refined a tiered support model aimed at providing non-pharmacologic intervention at every stage of the rop exam: before, during and after. this model is grounded in five core measures of trauma-informed, age-appropriate care1 and als’ synactive theory of infant development,2 which emphasizes the importance of individualized and developmentally supportive care for preterm infants. aim the aim is to highlight the theoretical framework and evidence base underpinning the model’s design and implementation while providing a systematic overview of the model’s development history and its application in a level iv nicu in the united states. it will also include a discussion of the practical challenges and solutions encountered during the implementation process. methods the new model was initiated as a change in clinical practice. previously, the rop exam team consisted of an ophthalmologist, developmental nurse, and child life specialist, with support for the infant provided only during the examination due to time constraints and the volume of examinations. recurring negative outcomes, such as increased stress responses and delayed recovery in infants, prompted a critical review of the process. through a comprehensive literature review, feedback from bedside staff, and the integration of personal experiences, a support model offering pre-, intra-, and post-exam interventions was developed. the pre-exam phase, provided by a music therapist, includes measures such as swaddling, providing positive touch, and soft singing or humming. during the exam, a child life specialist employs strategies such as gentle touch, non-nutritive sucking, and containment while maintaining a quiet environment. post-exam care involves a holistic nurse providing comforting and grounding techniques. families are incorporated into each phase of the process as much as they are comfortable. after multiple iterations and testing, the final version was established as the new standard of care. the implementation process included staff education, protocol development, and ongoing evaluation to ensure adherence and effectiveness. results/findings informal data collection, consisting of conversations with staff and discussions among the rop team members indicated several positive outcomes. the new model resulted in increased family involvement and satisfaction, enhanced staff comfort and confidence during the exam process, and reduced negative clinical outcomes. conclusion the development and implementation of this support model underscore several key insights related to the nidcap model: the importance of recognizing and responding to infants’ behavioral cues, which is central to providing individualized, developmentally appropriate care. the impact of sensitive caregiving on clinical outcomes, demonstrate that non-pharmacological pain and stress management interventions can significantly reduce stress and improve recovery in preterm infants. the effective incorporation of families into the support process for stressful and painful procedures, highlights the role of parental involvement in promoting infant wellbeing. the benefits of interdisciplinary collaboration in navigating complex healthcare systems to minimize discomfort and agitation during procedures through non-pharmacological interventions. relevance to nidcap this model serves as a promising framework that can be adapted and implemented in other nicus to enhance the quality of care for vulnerable infants. references: 1. fuller k, dewolfe t, coughlin m. trauma informed developmentally supportive care, developmental observer, 2022, 15(1), https://doi.org/10.14434/do.v15i1.33788 2. als, h. (1982), toward a synactive theory of development: promise for the assessment and support of infant individuality. infant ment. health j., 3: 229-243. https://doi. org/10.1002/1097-0355(198224)3:4<229::aid-imhj2280030405>3.0.co;2-h exploring an interdisciplinary support model for rop exams in the nicu borzi a cincinnati children’s hospital medical center, cincinnati, oh usa doi: 10.14434/do.v18i1.40893 10 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 griffiths n1,2, webb a3, spence k4, popat h1,3, & sinclair l2 1 grace centre for newborn intensive care, sydney children’s hospital network, westmead, nsw, australia. 2university of technology sydney, ultimo, nsw, australia. 3university of sydney, camperdown, nsw, australia. 4western sydney university, parramatta, nsw, australia. using social network analysis to understand the effect of developmental care education doi:10.14434/do.v18i1.40862 background developmental care (dc) is an important moderator against stressors in the newborn intensive care unit (nicu) for infants and their families. however, the impact of varying levels of developmental care education on infants and parents' experiences and outcomes remains unclear. social network analysis (sna) is a methodology that provides researchers with valuable information to improve our understanding of complex relationships and offers better insights into where and how to intervene to improve outcomes.1 we utilised this approach to evaluate the impact of the levels of developmental care education of neonatal nurses in the surgical nicu (snicu). aim to explore: a) if exposure to nurses with differing levels of developmental care education influences parent perceptions of nurse support in the snicu. b) if caregiving by nicu nurses with differing levels of developmental care education influences infant behavioural and physiological responses. c) what infant and nurse components in the snicu influence nurse delivered caregiving. methods a prospective observational cohort study explored associations between parents’ perception of nurse support, nurses’ perception of infant behaviour, and infants’ responses during nurse-delivered caregiving (physiological and behavioural) with nurse dc education levels. additional variables included in the analysis were caregiving duration, infant surgery type (group), infant severity of illness variables, and gestational age. data were analysed through a multistep process of logistic regression and exploratory network analysis. results forty-five infants, parents and nurses participated in the study. exposure to care by nurses with no dc education (n=22) increased infant heart rate during caregiving (or: 5.09, 95% ci: -3.36, 13.56 p=0.67), increased the duration of caregiving minutes (p<0.001), and decreased parents’ perception of emotional support (or: -0.12, 95% ci: -0.23, -0.01, p=0.043). increased infant severity of illness scoring (n-tiss) (or 1.01, 95% ci:1.01, 1.04, p=0.040) and narcotic infusion was associated with non significant longer duration of caregiving. infants with congenital cardiac disease (chd) received significantly shorter caregiving duration (or: 0.58, 95% ci: 0.37, 0.01, p=0.002). longer caregiving duration was associated with a higher behavioural stress score (or: 2.10, 95% ci: 1.59, 2.59, p=<0.001). we observed that the proportion of care provided by dc-educated nurses (density of dc education network) correlated with infant surgery group (figure 1). specifically, infants needing surgery for chd received care from a greater number of dc educated nurses. (or: 0.10, 95% ci: 0.49, 0.80, p=0.038). the density of the nurse network (proportion of repeat nurse assignments) was associated with gestational age and surgery group. both preterm infants (or: 0.13, 95% ci: 0.25, 0.71, p=0.06) and infants needing surgery for respiratory/ oesophageal anomalies (or: 0.11, 95% ci: 0.35, 0.61, p=0.021) received a higher proportion of repeat nurse assignments. infant none fine 1 fine 2 nidcap dc education level figure 1: examples of social network analysis density of education network for infants during their snicu admission 2025 • developmental observer • 11 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion using a novel analysis methodology, we have demonstrated a relationship between nurse dc education levels, nurse caregiving practices, infant physiological responses, and parent perceptions of caregiving in the snicu. we identified several clinical care factors that influence the duration of caregiving, as well as infant characteristics that affect caregiving allocation. providing neonatal nurses with dc education will help to ensure dc is embedded into everyday clinical care, supporting parent and infant outcomes within and beyond the hospital admission. relevance to nidcap this research offers nidcap trainers, nidcap certified professionals, and neonatal clinician’s valuable insights into the complex relationships, social processes, and social structures that interact in the snicu, and influence nurse delivered care.1 it underscores the significance of developmental care education in highly technical settings. reference: 1. parnell jm, robinson jc. social network analysis: presenting an underused method for nursing research. journal of advanced nursing. 2018;74(6):1310-8. https://doi. org/10.1111/jan.13541 aims birth of a preterm infant is an unfortunate event and a critical situation for the family, which causes disenfranchised grief experiences in parents. acute grief reactions occur when the parents realize that the newborn infant is not their ideal or fantasy child. attention to this type of grief in parents and supporting them to interact with their infants is particularly important, specifically in mothers. therefore, this study aimed to investigate the effect of applying video interaction guidance on disenfranchised grief severity in mothers with preterm newborn infants. method the study used a quantitative interventional approach with a semi-experimental method. the sample consisted of seventy-two mothers with preterm infants in the newborn intensive care unit, with thirty-six mothers in both the control and intervention groups. participants were selected using the convenience sampling method and allocated to the groups using block randomization. the intervention group underwent a video interaction guide intervention along with routine care for one week. the researcher recorded 5 to 10 minutes of natural mother-child interaction on the first, third, and fifth days of the intervention. then, on the second, fourth, and sixth days, the researcher edited the videos to highlight the best moments, or "golden moments," of the mother-child interaction. on the third, fifth, and seventh days, the selected golden moments were shown to the mothers, who received positive feedback about their reactions and emotions. meanwhile, mothers in the control group only received routine care. both groups completed questionnaires for demographic information and prematurity grief before the intervention, immediately after, and one week later. the collected data was analyzed using spss version 25 and descriptive and inferential statistics such as the t-test, chi-square, fisher, mann-whitney, and repeated measures anova. results/findings this study revealed that before the intervention, two control and intervention groups were homogenous regarding demographic characteristics and grief severity scores. the result of the paired t-test showed that the grief score in the intervention group decreased profoundly immediately and one week after the intervention. furthermore, the independent t-test revealed that this difference between the two groups was statistically significant (p-value<0.001). also, in the intervention group, there was a statistically significant difference between the three measures of grief severity using repeated measures anova (p-value<0.001). conclusion the findings of the current research highlight the significant impact of utilizing video interaction guidance in alleviating the the transformative power of video interaction guidance in alleviating the disenfranchised grief of preterm infants’ mothers hasanpour m1, mokhtari m1, kazemnejad a2, zarkesh mr3 1pediatric and newborn intensive care nursing education department, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 2school of medical sciences, tarbiat modares university, tehran, iran. 3department of pediatrics, school of medicine, yas hospital complex, tehran university of medical sciences, tehran, iran. doi:10.14434/do.v18i1.40864 20 • 2025 • developmental observer introduction qatar, located in the middle east, is home to nearly three million people from over 100 nationalities. approximately 15% are qatari citizens; the remainder are expatriates from diverse cultural, linguistic, and socioeconomic backgrounds. islam is the state religion. arabic is the official language and english is widely spoken. cultural values around family, caregiving, and health are deeply rooted in tradition and religious beliefs. healthcare in qatar has undergone rapid transformation in recent years, especially in maternal and child health. public health care is delivered by hamad medical corporation (hmc) and the primary health care corporation (phcc) for about 70% of the population; private healthcare options are also widely available. approximately 32,000 newborns are delivered across maternity hospitals per year, with 99.5% being institutional births. preterm birth accounts for about 10% of deliveries. the neonatal mortality rate stands at 4.28 per 1000 live births. consanguinity remains high at around 54%, contributing to a notable incidence of rare genetic conditions. despite high healthcare standards and growing awareness of neonatal developmental care, parent engagement in nicus across the region remains inconsistent. many parents rely on hired caregivers such as nannies or private nurses, and there remains a strong cultural expectation that medical professionals should provide all necessary care. traditional hierarchies in healthcare continue to inadvertently sideline parental involvement. additionally, many nicus in the region do not provide 24-hour parental access, and formal staff training in developmental care remains limited. the sidra nicu context sidra medicine, an academic women’s and children’s hospital in qatar, opened a nicu in 2018 which serves as the only tertiary neonatal referral center in the country. the unit receives complex, high-acuity cases, including extremely preterm infants born as early as 23 weeks’ gestation and critically ill out-born infants from across qatar and the gulf region. the average length of stay is 30 days. the nicu has 42 single-family rooms spread over two floors and is staffed by a multidisciplinary team of over 200 professionals, including neonatologists, nurses, therapists, social workers, pharmacists, and trainees. the care model is designed to promote individualized, family-integrated care. given its multinational workforce representing over 95 nationalities, sidra nicu faced early challenges in aligning developmental care practices across cultures, languages, and clinical training backgrounds. parental involvement was highly variable. emotional support infrastructure was limited. additionally, many staff lacked formal developmental care education. embracing infant and family centered developmental care (ifcdc) over the last seven years, a core multidisciplinary team of physicians, nurses, allied health, health assistants, social workers, lactation consultants, administrative staff, and parent support snugs: bridging cultures and languages through a culturally sensitive family support program dr bindu mary george, neonatologist; arwah eid, clinical nurse leader; lyndola greig, former advanced neonatal nurse practitioner; armida dela cruz, advanced neonatal nurse practitioner; niva siminivas, clinical nurse leader; snugs multi-disciplinary facilitators; dr jauro kuna gaji, senior neonatologist division of neonatology, sidra medicine, doha, qatar doi:10.14434/do.v18i3.42178 figure 1. cultural celebrations and themed event invite 2025 • developmental observer • 21 professionals worked together within the framework of ‘family integrated care’ (fic) to bridge gaps in developmental care. multiple quality initiatives tackled staff knowledge gaps in developmental care, staff-parent cultural-linguistic barriers, organizational challenges of a newly established nicu, and the promotion and practice of evidence-based ifcdc. this work reduced the disparity between the intra-uterine environment and the nicu and optimized the potential for better outcome for patients and families. the nicu has a 24-hour interpreter service and unrestricted parental access to promote care participation and skin-to-skin contact. dedicated social workers, palliative care teams, and women’s mental health professionals are engaged to support parental well-being. in 2022, sidra nicu officially adopted the ifcdc framework and began implementing the fine (family and infant neurodevelopmental education) program. all staff underwent fine level 1 training, and a core team completed level 2 certification. collaborations were initiated with international nidcap professionals to guide training and mentoring. a number of structural changes were introduced to align with ifcdc principles, including inclusive developmental care rounds. family engagement is a cornerstone of ifcdc, yet in this multicultural, high-acuity nicu, consistent implementation remained a challenge. families needed more than education; they needed emotional connection, peer support, and culturally resonant spaces to explore their experiences. the birth and growth of snugs in response, the fic team collectively launched ‘snugs’ (sidra neonatal unit group support) in 2022. designed through a quality improvement (qi) approach using plando-study-act (pdsa) cycles, snugs emerged as a culturally sensitive, multidisciplinary parent support initiative tailored to sidra’s unique patient demographics. rather than a one-sizefits-all support group, snugs was envisioned as an evolving platform grounded in ifcdc-aligned principles. the four foundational pillars of snugs are: 1. cultural relevance: respecting diverse family values, caregiving expectations, language needs. 2. emotional coping: providing safe, non-judgmental spaces for parents to express emotions. 3. peer connection: enabling shared learning and mutual support among parents. 4. family integration into care: strengthening parental involvement as primary caregivers. initial sessions were held in clinical spaces, promoted through bilingual flyers and an officially created snugs banner, and facilitated by clinical staff. one to four parents attended each of these early sessions and their valuable feedback guided growth and refinement through feedback-driven phases. 2023: snugs expanded under the guidance of a culturally attuned regional language speaking snugs lead facilitator and the core group of committed snugs drivers. nicu parents were invited to share their journeys and nursing and allied health teams were encouraged to co-lead sessions thereby strengthening the staff multidisciplinary team-parent bond and nurse empowerment. sessions were moved to a non-clinical tranquil healing garden space with refreshments. institutional funding was secured for refreshments and materials. real-time translator support was offered. active promotion occurred through nicu communication platforms. the hospital’s patient experience team supported logistical planning and promotion. officially approved parent invite flyers were created to boost visibility. attendance began to steadily rise. 2024: snugs became an integral part of nicu. the impact was vividly reflected in the wide array of themed events and informal parent support sessions held across 2023–2024. themed events were organized around key nicu awareness weeks, such as world breastfeeding week, international kangaroo care day, and pain awareness week, highlighting best practices in these domains. special celebrations, including mother’s day, father’s day, ramadan, and world prematurity day-november 17th are well celebrated with in-patient and nicu graduate families every year, figure 1. the program expanded its inclusivity by welcoming extended family members and siblings into its sessions, fostering a stronger sense of community support. sessions were maintained in an informal, approachable manner to encourage open dialogue, story and experience sharing, and parental engagement. snugs became visible across the hospital. the program was featured in the hospital newsletter, attended by senior hospital leaders, and was also incorporated into ifcdc rounds. these sessions were supported by a standardized template for staff introductions and every session’s content consistently emphasized parental involvement in caregiving, figure 2. feedback mechanisms were formalized through a suggestion box, free text parent feedback, parent questionnaires, and recording of attendance and tracking of session content. sessions were tailored based on suggestions, and ongoing feedback helped refine content and delivery. from its modest beginnings, snugs demonstrated progressive growth. by late 2024, bi-monthly sessions regularly attracted 15-20 parents per meeting, and additional extended family members representing a wide range of nationalities, languages, and cultures. 2025: the ongoing phase of snugs focuses on sustainability, expanding educational content and promoting the use of family-centered tools, such as the nicu mobile library on wheels, the family-centered patient care board, and peer mentorship opportunities. session topics now include recognizing infant cues, preparing for discharge-transition to home, and navigating 22 • 2025 • developmental observer cultural expectations around newborn care. staff members who actively support snugs are acknowledged, helping to cultivate a culture of teamwork, value and partnership. outcomes although the initial snugs sessions saw low attendance, engagement steadily improved from 2023 onward following the qi interventions. by continuously monitoring our practices, data shows successful implementation of the quality improvements with a gradual increase in parental engagement and in the awareness of the benefits of parental caregiving. staff-parental feedback and anecdotes from parents, ascertain improved experiences and satisfaction. scores on post-discharge parental surveys also reflect improved satisfaction and awareness. feedback from attendees highlighted several positive outcomes: • increased confidence in caregiving tasks and parent-infant interaction • improved understanding of parents’ role in nicu care • decreased feelings of isolation and anxiety • emotional reassurance and increased peer connection • strengthened trust in staff and the nicu team • high levels of satisfaction and gratitude expressed toward nicu staff indicating they felt more satisfied in their role as caregivers, enabling them to also connect better with nicu parents. lessons learned despite its growing success, the snugs journey was not without challenges. high patient acuity and the lack of protected time for staff to organize and facilitate sessions often posed logistical difficulties. cultural taboos surrounding emotional expression sometimes limited open dialogue, prompting the team to adopt an even more culturally sensitive and respectful approach. conflicting schedules also affected parent participation; in response, sessions were trialed at various times to better align with parent availability. snugs taught us that cultural humility, and a respectful, flexible, and open-minded approach fosters trust and partnership. successful strategies included use of linguistically and culturally matched facilitators, non-clinical environments, informal sessions for emotional expression, visible support from leadership and bedside teams, continuous collection of and response to parental feedback, and acknowledgement of the dedication of staff involved. conclusion in a multicultural high-acuity nicu, snugs represents more than a support group; it empowers families to not only cope, but to encourage active participation in their infant’s care, an essential aspect of optimizing neurodevelopmental outcomes. as the snugs initiative matures, its vision is to ensure every family in the nicu feels seen, heard and supported. future directions opportunities for virtual participation are to be explored for families unable to attend in person. there are plans to encourage veteran parents to attend sessions to support peers and to collaborate more closely with local and international parent networks to enable growth. additional plans include exploring the development of a storytelling and parent education tool web page or app for nicu families. acknowledgements this initiative is the result of immense collaboration across our clinical, administrative, and family teams. we extend our heartfelt gratitude to professor samir gupta, division chief of neonatology, neonatology leadership & nursing managers, professor charlotte tscherning-former division chief sidra neonatology, dr. ben lee-former neonatologist, dr sanoj ali-neonatologist, nicu fic multidisciplinary team, sidra patient experience, interpreter and catering service teams, nicu executive assistant-cyndy visita, nicu unit clerks, and our nicu parents and families for their support and contribution. figure 2. snugs session program and resources 14 • 2021 • developmental observer introduction the purpose of this nidcap report describing the chui nidcap training center is to share our history, experiences and to develop some recommendations for its future development and the development of other training centers. chui’s environment chui is a “hospital within a hospital”, part of ui health, a hospital on the west side of chicago affiliated with the university of illinois at chicago (uic). chicago is well known for its international population; this multi-cultural environment and the hospital’s mission of serving the underserved has given ui health a distinct culture and identity. the nidcap philosophy aligns with this mission as we develop a thoughtful and educated staff through various colleges and training programs. activities before training center establishment it is amazing to reflect that the nidcap journey at uic began 30 years ago! in 1991 our unit was devoid of developmental care. rooms were brightly lit, radios played at night and it was not unusual to see babies in incubators who scooted themselves to the sides of the incubator, looking for boundaries that we did not know they wanted! in the early 1990’s a small cohort of nurses were nidcap trained (thanks to a large grant that supported gretchen lawhon and rodd hedlund as trainers). in addition, all nursing staff had mandatory education in basic developmental care, and we became more aware of our practice. in 1998 uic received a grant from the harris foundation to establish a nidcap training center in chicago with dr. als as trainer. in january 1999, dr. als arrived with 2 suitcases dedicated to slide carousels and vhs tapes to do her lectures! thank goodness some things have changed! as we trained we began steps to improve our practice with staff education and formation of a developmental care committee and began staff education. a real breakthrough came when our nicu manager, beena peters, picked up much of jennifer’s salary from the therapy department in order to ensure dedicated time for her nidcap training. activities during our training center work jean and jennifer were certified as nidcap professionals in 2001 and as apib professionals in early 2003. jennifer began her trainer-in-training process in late 2003 and jean in 2004. two years later, in june 2006, we celebrated the opening of the nidcap training centers around the world children’s hospital university of illinois (chui) nidcap training center 10.14434/do.v14i2.33003 in honor of the chui nidcap training center’s 15th anniversary, and ui health’s 30 years of nidcap affiliation, we offer this nidcap report describing our training center. name: chui nidcap training center observers/authors: jean powlesland and jennifer hofherr date of birth of training center: june 2006 date of report: june 2021 center director at time of center birth: beena peters current center directors: jean powlesland and doreen norris-stojak developmental observer • 2021 • 15 training center with a half day conference and a gala celebratory dinner at uic. the chui nidcap training center has trained in wisconsin, iowa, minnesota, ohio and illinois. internationally we have trained in lebanon and saudi arabia. we have also presented nidcap topic lectures at conferences or seminars in poland, canada and the u.s. in addition, as fine trainers, our team has trained in four different states thus far. in 2013, jennifer left uic to become the therapy manager for the nicus operated by nationwide children’s hospital in columbus, ohio. we are fortunate to have her still affiliated with our training center, and she has been instrumental in our recent training in saudi arabia. activities after the training center we are still very much active and hope to be around for the foreseeable future!!! summary one of our great privileges was to have dr. als as our trainer for all three phases of our training. with each visit and interaction we learned so much from her. she had an uncanny ability to set the stage for our next phase of learning/integration. often something she said at one visit may have gone over our heads, but by the next time we had that “aha!” moment, of “now i understand!” one very important lesson we learned from her was to be flexible and innovative in supporting people to connect to the nidcap concepts, a lesson we have taken to heart in working across languages and cultures. recommendations: • consider how best to deal with the reality of changing financial and staffing constraints. if your unit has limited nidcap professional time, consider how to use your resources most effectively. o at chui, we shifted the work of our therapy team from only working with stable premature infants to becoming involved with all high-risk infants from admission. o we adapted the “sort” tool concept, developed by carol matthew and ginny laadt to help us pinpoint how to best utilize our resources. the system of risk triage helped us to identify the level of adverse developmental outcome the family-infant system faces, and to target resources accordingly. o we developed streamlined, individualized information for parents of the moderate preterm infants that may not qualify for therapy or nidcap referral. o we did “assessment in action” by providing 2-person support to babies during routine care, using both our nidcap and apib skills for assessment to write up a summary, goals and recommendations. o we developed “love letters”, a collaboration between developmental therapy and family support, using an 20th annual nidcap trainers meeting held on chicago original ui health nidcap team at the center opening gala. from left to right: back row: kristen grief, rn; jean powlesland rn, pamela klosta, pt. front row: agnes kutek, rn, suzanne herrera, rn, heidelise als, noel cortescaston, rn and jennifer hofherr, otr/l 16 • 2021 • developmental observer infant mental health framework to provide individualized, developmental information in the baby’s voice. • consider how to meet the need for mental health support in your unit, both for families and for staff. o we created a “family support specialist” position. in 2011, we hired our first family support specialist, jeanine klaus, ibclc, who was one of our first trainees after our training center opening. when she left to care for her aging parents in 2016 we hired jessica bowen, lcsw, nidcap professional and infant mental health certified who could use that knowledge to great effect to support families. when she left and just as the pandemic hit us, we hired sarah davey, a licensed professional counselor who had worked in a similar role in tampa, florida. each of these individuals grew the role and it has certainly convinced our nicu how critical a mental health professional is for our operations. the staff can attend monthly reflective sessions held on all three shifts. • consider how to be innovative and ahead of the curve when it comes to training and education. o the pandemic has forced everyone to embrace electronic means of communication, and we have learned to adapt our training to some degree. we piloted doing virtual reliability sessions with a few of our trainees in saudi arabia in order to give feedback to the nfi. this has been an interesting experience, while also yielding more information on what aspects we need to improve. • consider how to make change happen, keeping in mind the culture and leadership of each unit, and consider how to provide unit wide, comprehensive education on basic concepts of developmental care. o for example, after we were nidcap certified, we did routine nidcap observations on our high-risk infants. however, the nurses were very inconsistent in their understanding of the goal. bedside coaching only reached a small proportion of the staff. so instead our focus shifted to staff education, especially new hires. this more effectively changed culture. o one of the reasons we became fine trainers (u.s. fine led by joy browne) was because we saw the value of staff having a comprehensive basic level of education to facilitate change. as trainers-in-training, it may be too time consuming to create and deliver education to all staff, so having a program like fine is very useful. • consider ways to support those nidcap professionals or individuals invested in developmental care who may not have a network to support them. o we felt this was an important goal and inspired the creation of the midwest developmental care conference. a collaboration with trainers linda lacina and tammy casper in cincinnati and has been a recurring event since 2013. • consider ways for your center to experience and see what others do, and to help your trainees envision a more advanced nidcap care. o we had such limited developmental care experience before 1998 that we had difficulty imagining what nidcap care looked like. we appreciated the opportunity to see nidcap in practice in other units. we visited the former nidcap training center in milwaukee and jean went to the centers at university of connecticut and st. luke’s in boise, idaho. thanks to laura davis, dorothy vittner, cathy daguio, and karen smith who were so gracious with their time as well as linda gilkerson of the erikson institute, who volunteered her time for reflective sessions during our training. others advised us on logistics of operating a training center, so a big thank you to jim helm, laurie mouradian, karen smith and joy browne. o for trainees who do not have experience with developmental care, help them envision what is possible by sharing some inspirational examples through video. • consider how to adapt your teaching methods while working in different health care systems and international cultures. o training in places where the language, traditions, perspectives on families and the organization of the health care systems is different can be most illuminating. examples used in our own unit may not be relatable elsewhere. adapting your consultative advice based on how the health care system is organized is important also. o we spent time reflecting on how best to assess progress in training when a trainee’s written skills or language barriers might limit the communication of nuanced or subtle concepts. jean and jen getting ready to go to saudi arabia in 2018. developmental observer • 2021 • 17 reflective note over the years we have seen many changes in the units that we have worked in. the resistance to developmental care practices that was so common when we began is now rarely seen. the challenge is not convincing people to do it, but more about overcoming the many barriers of how to do it. reducing those barriers is key to sustained change. the nidcap nursery program provides a pathway and a list of outcomes to achieve. however, in hindsight we as trainers would benefit from more formal training and experience on managing those change processes. sustainability is critical also. perhaps one of the unhappy legacies of the pandemic is realizing how vulnerable some of our work is in face of a global emergency. and while culture change at the unit or hospital level may have happened, larger government agencies may have a different perspective and the power to override your practice. still, with each year we see such positive adoption of the nidcap philosophy in various formats and various ways. it is most gratifying to see how dr. als’ ideas have spread around the world! as we finish our 3rd decade of nidcap association, we don’t know what nidcap or nicu care will look like in another 30 years, or what role chui will have, but we are proud of our history and look forward to great changes in the years ahead. nicu leadership at 2019 midwest developmental conference mission the nfi promotes the advancement of the philosophy and science of nidcap care and assures the quality of nidcap education, training, mentoring and certification for professionals, and hospital systems. adopted by the nfi board, july 1, 2019 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationship-based, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 developmental observer 20 24 | v o l 1 7 | n o . 2 the official publication of the nidcap® federation international we are all connected; we mutually support, teach, learn from, and enrich one another. —heidelise als. doi:10.14434/do.v17i2.38122 inside supporting closeness...................... 1 building relationships, coinn 2024 editorial .............................................................. 2 becoming an advocate for ........... 7 newborn care in hungary profile of a nidcap leader ............. 10 family voices ............................................ 13 global perspective: qatar ............. 16 nidcap training centers ............... 20 worldwide: denmark nidcap on the web ............................ 26 nidcap training centers ............... 28 introduction in may of this year, aalborg, denmark, became a hub of international expertise as 275 passionate nurses from 28 countries convened. their mission was to showcase groundbreaking work and exchange insights at the forefront of newborn care. amidst the picturesque landscapes of denmark, these dedicated professionals explored topics through vivid oral presentations and a rich display of poster presentations. illuminating the event were keynote addresses tackling pivotal global issues in newborn care and neonatal nursing, underscoring the urgency of their shared mission. the overarching theme, "supporting closeness – building relationships," echoed the core principles of the nfi and nidcap philosophy, resonating deeply with attendees. throughout the conference, a diverse array of sessions explored the nuances of developmentally supportive care, highlighting the relentless pursuit of excellence in nurturing the most vulnerable members of our society. the organiser was the council of international neonatal nurses (coinn) which is an international organisation comprised of approximately 16 national organisations and over 4000 individual members. coinn’s vision is “unifying neonatal nurses globally” with a mission “to promote excellence in neonatal nursing and health outcomes for the infants and families nurses serve and to act as an international leader in development of professional standards of neonatal nursing.” many nidcap trainers and nidcap professionals attended the conference and presented their work on developmentally supporting closeness – building relationships, coinn 2024 doi:10.14434/do.v17i2.38128 (continued on p.2) tenna gladbo salmonsen, rn, mscn, danish nidcap training center, aahus, and kaye spence am facnn, australasian nidcap training centre. 2 • 2024 • developmental observer in this edition, we explore the multifaceted challenges confronting healthcare professionals as they care for hospitalized newborns and their families. the global crisis of infant mortality persists, particularly pronounced in developing nations where the shortage of nurses exacerbates the situation. considering these pressing concerns, it becomes imperative to explore avenues for support and collaboration. livia nagy bonnard's narrative underscores the influential role parents can play as advocates, as she shares her work to enhance newborn care in hungary. additionally, sophia gerassis sheds light on the enduring impact of siblings' experiences in the neonatal intensive care unit (nicu), offering valuable insights into familial dynamics during such challenging times. the commendable growth of the nidcap federation international (nfi) is an inspiration, with fatima clemente exemplifying exceptional leadership in advancing nidcap and developmental foundation programs. indeed, strong leadership is the cornerstone of nfi's important work, as evidenced by the collaborative efforts of two nidcap training centers in denmark, extending their global reach. bindu george's account offers a glimpse into the commendable initiatives underway in qatar, showcasing developmental care strategies and the requisite training to support them effectively. the dissemination of such initiatives underscores the expanding influence of nfi, as it endeavours to elevate the standard of care for hospitalized newborns worldwide, while simultaneously bolstering its professional membership. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia editorial focused topics. these were consistent with the conference themes and reinforced the focus of the nidcap federation international (nfi). key themes what struck us at this conference was the disparity between the developed world and the developing world. we were presented cover image by stina klemming, sweden doi 10.14434/do.v17i1.37037 spreading the word (continued on p.3) nidcap professionals and trainers at the coinn conference 2024 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. with a stark global contrast where the decrease in nurses, such as in africa was directly related to an increase in deaths in oneto five-year-olds. this has huge implications for poaching of staff from these countries to fill gaps in the failing systems in the developed world. it also made us think about the global reach of the nfi and ways that we as an organisation could help in these countries. it certainly calls for further discussion. the conference presented many opportunities for the pro-motion of developmental care practices and education, and it became clear how many of these strategies could be simply used in some african systems as well as other depleted areas such as india, se asia and eastern europe. keynote presentations an informative session was given by joy lawn, professor of maternal, reproductive and child health at the london school of hygiene & tropical medicine (lshtm). dr lawn spoke on the topic every newborn everywhere: how can we get neonatal nurses everywhere. she explained that while most women in africa now deliver their babies in health facilities, these hospitals lack the life‐saving technologies, equipment, and trained staff that are editorial board necessary to manage preterm babies and newborns in distress. over one million newborns die annually, 75% from preventable causes. together, south-east asia and sub-saharan africa account for 79% of the global burden of neonatal mortality. evidence has shown the importance of specialised neonatal nurses to improve the chances of newborns’ abilities to survive and thrive. yet, the global shortage of nurses was also estimated to be 5.9 million of whom 89% are needed in low to middle income countries (lmic) where the burden of neonatal mortality is particularly high (see fig 1, p.4). the availability and international distribution of nurses were a focus of the presentation by howard catton the ceo of the international council of nurses (icn). he is committed to ensure that the icn effectively represents nursing worldwide, advances the nursing profession, promotes the wellbeing of nurses and advocates for health in all policies. he painted a sobering picture where nursing is heading for a crisis with an estimated shortage of 5.7 million by 2030. he explained the high international mobility of the workforce as approximately 1 in 8 nurses are working in a country other than where they were born or trained. (continued on p.4) 4 • 2024 • developmental observer the projected nursing density in 2030 raises many concerns. countries in africa and southeast asia have a critical shortage which impacts on health care and the infant survival rates. countries in southern europe and eastern mediterranean have a challenge to increase the number and influence of nurses in these countries. what does this mean for the nfi? as we recruit more nurses into nidcap training and fine education we have a good opportunity to promote their work and their unique contributions to infant and family centred care. a strength is the partnership with parents and the nfi could promote this role-modelling to other countries. in figure 2 on page 5, the target countries are easily identified in the reds, pinks and lighter blue. the power of parents was showcased in the opening address by lívia bonnard nagy on the role of parents in the nicu and beyond. lívia is the co-founder, vice-president of right(s) beside you hungarian patient organization, fellow, efcni european standard of care for newborn health, nidcap member of family advisory council, fine (family and infant neurodevelopmental education) faculty member in hungary. her impressive biography and her emotive presentation captured the audience as she led us on her journey, as the mother of an extremely low birth weight infant. she shared with us how the experience of having a preterm infant still affects her family’s life, as she was not allowed to stay at the hospital or visit. particularly distressing was that she received no help with breastfeeding, parenting skills or with questions she had about her baby. she suggested using the parents as painkillers – be allowed to be present – to use the senses – touch my baby, smell my baby, hold my baby. she shared with us that 18 years later she is still a nicu mom, and despite many challenges her son is ultimately happy. from her experience she was driven to improve the education of all health care professional in hungary. her work has improved conditions for other families by educating nurses and starting fine training for parents, an innovative program. this keynote presentation provided an emotive start which put what we as neonatal nurses do into perspective. developmental care themes the coinn 24 conference was very inspiring on multiple levels. from a supportive developmental perspective there were several interesting and challenging presentations. for us, the challenge was to be present at all five parallel sessions, as there were many presentations under this theme. here are a few selected presentations. supporting parent-infant closeness in clinical care by anna axelin from turku, finland. anna reminded us of the importance of giving the best opportunities to support parents and infants to be together. she described the three steps of the path of parent-infant closeness in clinical care. maternity care do we support parental prenatal attachment and development of co-parenting, delivery – do we support immediate skin-toskin and initiating breastfeeding, and newborn care – do we practice family centered care (fcc) skin-to-skin care (ssc), couplet care, home care. she reinforced the need for support as attachment starts before delivery, maternal–fetal attachment, and how bonding and attachment are very important for the development of the infant-parent relationship. figure 1: global distribution of neonatal mortality (source un inter-agency group for child mortality estimation (2023)) 2024 • developmental observer • 5 stina klemming, nidcap trainer from sweden, presented a summary of the anticipated global impact of kangaroo mother care (kmc) and potential death prevention annually. the current impact of kmc is anticipated to prevent 10,000 global deaths, add the impact of scale up implementation prevents 150,000 deaths, further add the impact of community initiated kmc prevents 250,000, then add impact of immediate kmc research and the death prevention is 400,000. a global target for prevention is to distribute kmc with an implementation strategy to all countries. the nfi is in a position to endorse and promote current skin-to-skin programs and resources. the nfi kangaroo-a-thon is a start and perhaps next year each nidcap training centre could partner with a hospital in a developing country as a strategy of global outreach. with the figures above this could be a worthwhile collaboration. sofia augoustakis from rigshospitalet, copenhagen, denmark, presented her research on the duration of infant-parent skin-to-skin contact in neonatal wards: a danish nationwide cross-sectional survey. this study has highlighted the importance to measure some of the care we provide, we know caregiving has a great impact on parent-infant bonding and brain development. nadine griffiths, senior nidcap trainer from sydney, australia, presented her poster on the development of a screening process for parent depression and stress after discharge from a surgical nicu. her team found a multidisciplinary standardised screening protocol was feasible and effective in establishing referrals to services for families at risk. her findings that 24% of mothers and almost 42% of fathers reported depressive symptoms suggest screening should be extended to all families discharged from a nicu. this was one of many groundbreaking poster presentations at the conference. in the session sleep and neuroprotective care, jannie haaber, from the danish nidcap training and development center, copenhagen, dk and tenna gladbo salmonsen, from the danish nidcap training and development center, aarhus, denmark opened with the presentation burden of care – a fact – or is it? they took us on a short journey of the importance of brain development, development of the senses and the impact of the environment; how daily procedures and daily care can be an explosion of sensory stimulation and the crucial need for positive sensory regulation, and parental involvement. they reminded the audience of the importance of being able to identify the infants’ sleep and awake states to know when the infant is ready to interact, and with reference to heidelise als, why it is so important to be present and observe to understand the infants behaviour. another aspect of parental involvement in pain management was from alexandra ullsten, music therapist from sweden, who told us about parent delivered lullabies, when the infant is skin-to skin before, during and after a procedure. it is exciting to follow the study swepap, which is an rct. further the presentation was a part of a workshop – building relations to stop pain in the nicu with several presentations about pain management. marsha campbell yeo from halifax canada underlined the importance of having parents actively engaged in pain management. among other things, she told us about a figure 2: projection of nursing personnel density (source icn state of the world’s nursing 2020) 6 • 2024 • developmental observer website parenting pain away, which was developed to support parents and their families to feel confident to cooperate with health professionals in reducing their infants procedural pain. bonnie stevens, from toronto canada talked about implementation of pain management in newborn/preterm infants and how difficult it is but also how crucial it is to prevent pain and stress. in this discussion, she added the need for system changes requiring management level decisions to prevent pain and stress in newborn and preterm infants. an expert panel of speakers provided insight into the care of the extremely preterm infant < 25 weeks. we heard speakers from japan, miki konishi, akiku kuroda, ylva blomqvist and victoria karlsson from sweden. it is important to focus on this group of infants since they are immature, vulnerable and there are different ways to practice care. reflections from the session included having a "tiny baby unit" within the nicu to keep knowledge and practice to a few very dedicated nurses. 'the tiny baby collaborative' – an international research group comprised of clinicians and researchers dedicated to improving the lives of children born at ≤23 weeks’ gestation and their families foster collaboration and mutual learning among hospitals with exceptional outcomes for the most premature neonates. the goals are to identify and conduct research to improve care for the most premature neonates and their families. they share data on outcomes and practices among participating centers, and to compile evidenceand expert-based guidance related to the care of infants ≤23 weeks’ gestation. the overall impression is that there is a need to share knowledge about the smallest and most vulnerable infants from the very beginning of life. neonatal palliative care was presented by alex mancini schmidt from the uk. there was an emphasis on the importance of consistency between national guidelines (national network) concerning end of life or palliative care. the goal is to help parents when everything is uncertain and continue to develop the ability to observe what each infant needs in this very special situation. during the workshop, 'fathers in the nicu', the speakers anne brødsgaard and mette petersen from denmark and francine de montigny from canada gave us valuable insight as to why it is important to have a greater focus of fathers, when their infant is in the nicu. we need to make the fathers/partners feel important and remember to ask, what they need, and acknowledge the importance of both parents in the infants life and the process 'to become parents'. peer to peer support is worthwhile, father support groups are an example. in denmark a national study is the supported study – support for first-time fathers of preterm infants in early parenthood. we await the results. call to action attendance at this conference has triggered many issues that we feel the nfi may consider as we move forward with nidcap across the globe. three issues stood out for us: the power of skin-to-skin on closeness and brain development, the global issues threatening newborn care and survival in developing countries, and the need for a universal education program for developmentally supportive family and infant care. international coinn participants 14 • 2025 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion our small sample (n=87, average=15 patients/audit & nidcap n=7, average 3.5 patients/audit) and non-statistically significant results are explained by the size of the nicu and we recently followed patients for the nidcap advanced practicum for a few months. despite this small sample, we were able to demonstrate that this project not only improved ssc duration and frequency in our nicu but also that nidcap professional follow-up almost doubled the duration of ssc sessions. relevance to nidcap these findings are relevant to nidcap, as they support previous similar findings in france.6 since parent-infant attachment is at the heart of nidcap, the importance of ssc as an essential strategy to foster behavioral cue understanding, co-regulation, and the principle of zero-separation cannot be understated. this study demonstrates that we can maximize this strategy with nidcap advanced practicum follow-up. references: 1. coughlin m, dewolfe t, fuller k. quality indicators for developmental care: a trauma informed conceptual model as an exemplar for change. in: kenner c, mcgrath j, editors. developmental care of newborn and infants: a guide for health care professionals nann national association of neonatal nurses. 3rd ed: wolters kluwer; p. 65-84.2003, isbn/ issn:9781975148393 2. conde-agudelo a, diaz-rossello jl. kangaroo mother care to reduce morbidity and mortality in low birthweight infants. cochrane database syst rev. 2016, (8):cd002771. doi: 10.1002/14651858.cd002771.pub4. 3. darmstadt gl, kirkwood b, gupta s, darmstadt gl, kirkwood b, gupta s, et al. who global position paper and implementation strategy on kangaroo mother care call for fundamental reorganisation of maternal infant care. the lancet. 2023, 401(10390):17513. doi: 10.1016/s0140-6736(23)01000-0 4. pierrat v, mitha a. contact peau-à-peau pour le nouveau-né prématuré ou de petit poids de naissance. in: sizun j, guillois b, tscherning c, kuhn p, thiriez g, editors. soisn de développement en période néonatale de la recherche à la pratique. chapitre 13. 2e ed. ed: lavoisier médecine sciences; 2022, p. 90-6. isbn : 978-2-257-20768-5 5. als h. theoretical persepective for developmentally supportive care. in: kenner c, mcgrath j, editors. developmental care of newborn and infants: a guide for health care professionals nann national association of neonatal nurses. 3rd ed: wolters kluwer; 2022, p. 35-64. isbn/issn: 9781975148393 6. pierrat v, coquelin a, cuttini m, khoshnood b, glorieux i, claris o, et al. (2016). translating neurodevelopmental care policies into practice: the experience of neonatal icus in france-the epipage-2 cohort study. pediatr crit care med. 17(10):957-67. doi: 10.1097/pcc.0000000000000914 aims the neonatal unit at university college london hospital is the only nidcap training centre in the united kingdom. we are committed to improving the collaboration between healthcare professionals and families. in 2023, we identified an opportunity for our multi-disciplinary team to work together to enhance this relationship by launching developmental care ward rounds. our quality improvement project (qip) had three main aims: 1. support parents as key nurturers 2. provide individualised care plans for infants and their families 3. ensure that staff feel valued as part of a wider interdisciplinary team methods key members of the neonatal team were identified as stakeholders for this project. these included an occupational therapist (nidcap trained), physiotherapist, speech and language therapist, psychotherapist, neonatal nurse and neonatal consultant with an interest in developmental care. the plan-dostudy-act (pdsa) model was used in project planning and execution. a questionnaire was sent to parents asking them for their views and recommendations. families were keen to participate and expressed a desire for an opportunity to share what they knew about their baby and to learn more about the different stages of their infant’s development. regular meetings were held to design a poster, parent leaflet and a bedside record sheet which includes an individualised care plan for the infant and family supported by the wider interdisciplinary team. the project was registered as a qip within maternity services. to ensure a clear and efficient referral and selection process, a standard operating procedure (sop) was developed and distributed to all staff. additionally, regular bedside education and engagement sessions were held with all members of the neonatal team. "this is the best ward round i have ever been a part of": implementing developmental care ward rounds in a tertiary neonatal unit in the uk. sammut a, lim am, jurikova m, furtado m, hicks ba. university college london hospitals, nhs foundation trust, london doi:10.14434/do.v18i1.40885 2025 • developmental observer • 15 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 results/ findings our developmental care ward rounds were launched in august 2023 and have been running regularly for the past ten months. two to three families are referred by staff and approached every alternate week. they are invited to participate and are supplied with information about what to expect during the ward round. this gives them time to prepare questions addressed to the interdisciplinary team. around 40 families have been seen so far. verbal feedback from families and staff involved has been very positive with some stating that it has been the best meeting they have ever had with professionals since they started their journey with us on the neonatal unit. a formal post-implementation questionnaire is currently being distributed to families and staff involved as part of a research project run by our chief research nurse intern. conclusion/relevance to nidcap our developmental care ward rounds focus on providing individualised care to the infants and families on our neonatal unit. they offer parents the opportunity to demonstrate and enhance their role as lifelong nurturers as they lead on discussions and care plans for their baby. it has also helped nidcap professionals identify which babies would benefit from a detailed observation. each bedside record sheet emphasises the infant’s unique behavioural communication and contains information on how to adapt their caregiving environment to make it more suitable to their needs. moreover, this open communication helps build trusting relationships between health professionals and families. staff involved have commented that it has helped advance their professional and personal growth and increased their job satisfaction. our commitment to improve ensures that we continue to make a positive impact on families. sponsor of the nfi dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2025. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 8 • 2024 • developmental observer f a m i l y v o i c e s o ur story starts with our first ultrasound for our first pregnancy at eight weeks when we found out we were having twins! i just remember seeing a lot of white on the screen and holding my breath in anticipation of the tech saying that something was wrong. but instead, she said “well you have a couple little nuggets in there.” we were in shock! they knew immediately that they were identical because they were sharing a placenta. shortly after we learned that this also meant that they were at risk for twin-to-twin transfusion syndrome (ttts). we were told that we would have to have ultrasounds every two weeks starting at 14 weeks to monitor for ttts. at our 16-week ultrasound, we found out that we would be welcoming two sweet boys into our life! we made it past 24 weeks when the chance of developing ttts was higher and thought we were in the clear! other than there being two babies, it seemed like a pretty uneventful pregnancy. i felt great and the boys were growing perfectly. but that all changed at our 28-week appointment. in mid-july 2019, my husband dylan went to fort carson for his two-week annual training for the army national guard. my parents came into town to visit while he was gone. i was looking forward to taking them to one of our ultrasounds at the perinatologist to see their grandsons. on tuesday at nine in the morning, we went to my 28-week appointment. i remember driving there in a state of ignorant bliss, no idea that an hour later my whole world would be turned upside down. during the ultrasound, the tech immediately noticed that there was a large fluid discrepancy between the boys. ryan, the recipient twin had lots of fluid, while mason, the donor twin, had very little. they immediately called the children’s hospital colorado (chco) fetal care center for a consultation, and i had an appointment scheduled for the next morning. my parents and i were in shock as we drove home…i had to make the hardest phone call of my life to my husband to let him know that things weren’t good, and he needed to come home. he came home that night and the next morning we went down to chco. after a long ultrasound and a fetal echo, the boys were diagnosed with stage 3 ttts and starting to show signs of stage 4. ttts has 5 stages. stage 1 is a large fluid discrepancy between amniotic sacs and stage 5 is the death of one or both twins, so it was a pretty severe case. we were beyond the point where they could try to close some of the connections via laser surgery, so we were told that i would be admitted for continuous monitoring and get two doses of steroid and deliver about 48 hours later. mason had different plans, however. i started having severe contractions at about one in the morning, and despite medication to reduce them, mason was having consistent late decelerations with each contraction. at 3:30 in the morning the attending let me know that it was time, and they were born less than 30 minutes later just before 4 am on thursday. so, between the ignorant bliss of thinking that everything was ok before my 28-week appointment and the boys’ birth was 43 hours. it was the biggest whirlwind of our life. after the hustle of surgery was over and getting to quickly peek at the boys on their way to the nicu, i was taken back the experience of navigating the nicu as a parent can be frightening, overwhelming, and filled with uncertainty. it can also be a life changing experience that drives one to seek out opportunities to create a positive difference for others. in this story, we hear firsthand how this mother was able to gain strength from her lived experiences and maintain a positive attitude which ultimately sparked her commitment and desire to make a difference in the lives of nicu families. a mother’s perspective of the nicu experience: passion for advocacy ignited emily fawaz column editor: debra paul, otr doi: 10.14434/dov17i3.39756 skin cuddles with mom 2024 • developmental observer • 9 f a m i l y v o i c e s to my room to recover. once i was settled, dylan hurried over to the nicu to check on the boys and i was alone. the nurses came in for their interval checks, but it was just me, feeling like, how could this possibly be real life? i didn’t realize how much that moment impacted me until i was preparing for my c-section with my third son when i was sitting in my ob’s office crying over the thought of not getting to hold him or having him taken away i was still feeling that pain from the first hours and days in the nicu. my in-laws brought us donuts the morning my twins were born, and i remember taking a bite and my first thought was that i would feel the boys start kicking because they always wiggled when i ate sweets. and then my heart sank because they weren’t inside me anymore, but they were supposed to be. it was three days before i was able to hold mason and a week before i was able to hold ryan. mason kept us on our toes with an unplanned extubation while i was holding him triggering them to call a code blue. twenty-four hours later, he was taken to the or for emergency surgery for a bowel perforation. he had an ostomy for eight weeks until he went back for surgery. following the second surgery, however, he developed a central line infection that spread to his blood and lungs setting him back in his respiratory progress. talk of a trach and g-tube started, but after a final round of steroids mason made a huge leap and weaned down to low flow. meanwhile, ryan had a couple of steps back with the initial attempt to extubate him on his second day of life. he ended up on an oscillator and on nitric oxide for about a week. he steadily made big gains after weaning to low flow by around 34 weeks gestational age and was our feeder-grower until he discharged in mid-october – right around my due date. mason took another month to be ready to go, but we finally walked out of the nicu for the last time with both of our sweet boys on november 15th. we had watched so many other families walk by our room with their sweet kiddos for the last time and yearned for that moment. it felt like it would never come. and then it did! that moment felt better than i could have possibly imagined. reflections our nicu experience was the most challenging, devastating and transforming experience of my life. we were in the nicu for 114 days before we finally went home, and during that time, i only went one full day without seeing them. and while it was exhausting to be there for 12-18 hours a day every single day, i feel so fortunate to have been in a situation that allowed me to do that. when you think about becoming a parent, you expect to be with your baby all the time. so, when you are away from them, it is a strange feeling of wondering, am i actually a parent? is this real? are those really my kids? and even though we were there every day, it was very hard for us to feel bonded to them. at the time, i thought that i was. i cared about them, worried about them, and spent every day with them, but didn’t realize how long it took me to bond with them until i had my third son. i realized how quickly i bonded with my son, owen, compared to my twins. but i don’t think that is surprising. while i was excited to see my twins and touch them and hold them for the first time, it wasn’t what i had hoped and dreamed for when becoming a mother. in the nicu there are wires and alarms and tubes everywhere. and while they may be cute in their own way, they are not the chunky, peaceful, newborn that you imagine curled up, sleeping on your chest. all i wanted to do was hold them and snuggle them and nurse them, but i couldn’t – the first few days all i could do was cup their head and hold their feet, with my arms in the isolette standing there with swollen tired feet, pain in my stomach from my incision, and tears in my eyes. honestly, i would finally walk away when i was just too heartbroken to stand there anymore. and then we could finally hold them, and it was wonderful. those moments of finally getting to kiss our sweet babies and see them lying on our chest after days of waiting were so amazingly, and inexplicably sweet. but days turned into weeks and weeks into months and a lot of days, despite being there all day and having that time, i didn’t even want to hold them. i didn’t want to sit there by myself with the deafening sound of the cpap in my ear, staring at the monitor in fear that they would brady for hours on end. i just wanted my life to be different than it was. i felt so much sadness and guilt every day. i felt guilty that i wouldn’t want to hold them, or i felt guilty if i only had time to hold one and not the other, so sometimes i would just not hold either if i didn’t have time to hold both of them. i also had a really hard time figuring out a good schedule for myself that worked around care times and pumping and trying to fit in a meal and being available for rounds. skin to skin time with dad 10 • 2024 • developmental observer the nurses, and providers encouraged me to be involved and to advocate for my babies – and i definitely did! i was there for rounds almost every single day. and while i absolutely felt that my thoughts and opinions were heard and considered and validated during rounds, overall, we were not in control of their care. and that’s not necessarily a bad thing! i can’t emphasize enough how in awe we were of the care and skill of the whole team that took care of our boys. the nicu specializes in growing these babies to get them home and thank god because that is way beyond my scope as a parent. but at times, it didn’t feel like they were my boys-it felt like they were babies that, while following strict rules to care for them, i was supposed to love deeply and devote all my time and energy toward with the hopes that one day they would be big enough and strong enough to come home and then they would be my babies, but they weren’t really mine yet. i am so wholeheartedly thankful to the bedside nurses who helped us to slowly overcome those feelings. our primary nurses were the shoulders we cried on, the ones who could make us laugh even on the really hard days, and the ones who could make us feel like parents. those nurses helped us to see past the lines and monitors and tubes and told us how sweet and adorable our boys were even when it felt like our family and friends couldn’t. that is just another thing that you grieve you look forward to your family getting to snuggle and love on your newborns, but our parents didn’t hold our babies until they were 10+ weeks old because they were so afraid to hold them, so afraid to hurt them, or make them sick, so afraid of how fragile they seemed. we tried hard to love our boys, we worried about them constantly and tried to convince ourselves that we really were their parents. but at the same time, we had to release control of their care to other people, and that is so unnatural. i feel like many providers in the field know that, but the way that the tension feels in your heart is something that i believe can’t truly be understood unless you have been there. while in the nicu, i was able to connect with another nicu family in a similar situation and i also had a mentor through children’s hospital come meet with me. i was so grateful for those connections because often those conversations with strangers were way more powerful and reassuring than conversations with even my closest family and friends. our family, especially, didn’t want to see us hurting and wanted to try to say something to make us feel better, something to take away the pain. but we were hurting and there wasn’t anything that they could say to make the pain and sadness go away. we were hopeful and terrified, so grateful they were alive and also mourning their journey. we knew that every minute we had with them was a gift but that in an instant everything could change. it’s just hard, every single day was so hard. when mason was still admitted and ready to be discharged, we fought for the discharge to be on a friday night instead of saturday morning so that we could have a whole weekend before my husband had to go to work that monday. we were asked “you have already been here this long [114 days], what is one more day?” and while i can understand why they would think that, they need to understand that it never gets easier. it’s not just one more day. it’s another day of being away from home, another day of suppressing our parental instincts and letting other people be in control of our babies, another day of not getting to snuggle up on the couch and just be together as a family because the cords don’t reach, and another day of walking out of those hospital doors without our babies. that feeling is so unnatural, and it never gets easier – i would say it just gets harder and harder because as you do start to bond and become more attached to your baby it hurts so much more to leave them. the beginning of our time in the nicu was mentally and physically draining, we were running on adrenaline, and we were tired from hearing all the alarms and standing up at the isolette and just the roller discharge home november 2019 first day of school, 2024 2024 • developmental observer • 11 coaster of good and bad days, and good and bad moments, that many families describe. but a few months in was hard in a different way. we were more bonded to our boys and just becoming so worn down and tired of being there. we were starting to feel more protective of them and more comfortable participating in their care. they were also nearing being ready to go home so they weren’t as fragile as they were when they were first born, so we were just ready to take them home and stop having their care controlled by someone else. we did fight that last fight and we discharged in the evening of friday november 15th – and it was one of the sweetest days of my life. removing the pulse ox and monitor wires, getting them dressed in their matching outfits that we picked out for them when we found out we were having boys, loading them in their car seats, walking down the long nicu hallway and out the doors, riding down the glass elevator with both our sweet boys, walking out the double glass doors of the hospital and to the parking garage, and finally driving away – driving home. it was so familiar since we had walked that walk and driven out of that parking lot probably 200+ times except this time we were actually going home. we arrived at our house to balloons and signs and a big group of friends playing “the boys are back in town” ecstatic to welcome us home at last. i still can’t listen (or even think) about that song without tearing up. it was a moment that i will cherish forever. but the journey didn’t end there by any means. and while it was so sweet to be home, it was also very hard to take on the role of caretaker that a whole team managed at the hospital and do it on our own. we had weekly well visits and weight checks, and follow up with various specialists, and evaluations with early intervention. i think we had 15 different appointments in the first four weeks we were back. meanwhile, we were averaging probably two hours of sleep a night total. it was really hard, but we also chose to see the joy and appreciate that not everyone gets to bring home their kiddos from the nicu, and we did, and we are eternally grateful for that. my husband is quick to start sleep talking or do nonsensical things when he is in that in-between sleep and awake state or when he is woken up. we have some funny stories from our 2am baby adventures – one of the funniest times were when he would scoop up an oxygen tank off the bed, instead of the baby and start patting it over his shoulder and bouncing. over the past months and years since being home, we have had the pleasure of watching these amazing boys grow and develop into the hilarious and sweet boys that they are. they are feisty, and opinionated, and loud, they are the sweetest one minute and tantruming the next, and i’m here for all of it. it’s definitely not easy and being overwhelmed is just a regular part of my life, but a day does not go by that i don’t appreciate and admire how far they have come. as if our life wasn’t busy enough we were blessed (and surprised) to find out that we would be expecting another boy and he arrived just 17 very short months after the twins were born. that pregnancy could not have been more uneventful, and owen stayed put until my scheduled c-section at 39 weeks. he was born and less than 48 hours later we were walking out of the hospital doors with him to go home. it was a very, very different experience. although i am so thankful to have my twins and so thankful to have been blessed with a second and uneventful pregnancy, the first year with all three boys was a really hard year. for the first few months after owen was born, i was both overwhelmed with joy and gratitude for how infinitely better our experience with owen was compared to being in the nicu with the boys, and also devastated because i didn’t really know what i had missed, and i realized that i had missed some of the sweetest, most amazing moments with the twins because they were born prematurely. while i wouldn’t choose to go through nicu again and wouldn’t wish that experience on anyone, i am also grateful for what we have learned about our children and life in general. i am grateful for the strength dylan and i have gained as individuals, as parents, and in our marriage, and i am also grateful for the way my life trajectory has changed and for my growing passion to help other nicu families. families in the nicu are experiencing a weight of pain, fear, and grief that is hard to even fathom. it is lonely and heartbreaking even on the good days. while we may never be able to take away that pain completely, i wholeheartedly believe that supporting parents and connecting them with other nicu families both during and after their nicu stay will not only lighten the burden of the nicu but also have lasting impacts on the family in the weeks, months, and years to come. emily fawaz lives in fort collins, colorado with her husband and three children. during her twins 16 weeks in the nicu, emily developed a strong passion to support and advocate for nicu families. she participates in various programs to support nicu families, including providing lived expertise, and guidance, and serves as a parent leader in several capacities. emily is an occupational therapist and supports nicu families in a professional manner as an ot in early intervention. “our primary nurses were the shoulders we cried on, the ones who could make us laugh even on the really hard days, and the ones who could make us feel like parents.” 2023 • developmental observer • 13 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 hasanpour m1, gorgani firozjaee f2, shariat sv3, esmaeilnia shirvani t4, kazemnejad a5 1ph.d. and professor of nursing, nidcap professional, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 2msc of nicn, school of nursing and midwifery, tehran university of medical sciences, tehran, iran. 3professor of psychiatry, department of psychiatry, school of medicine, mental health research center, social injury prevention research institute, iran university of medical sciences, tehran, iran. 4associate professor of neonatal-perinatal medicine, department of pediatrics, school of medicine, vali-asr hospital, imam khomeini hospital, tehran university of medical sciences, tehran, iran. 5 professor of biostatistics, school of medical sciences, tarbiat modares university, tehran, iran. doi: 10.14434/do.v16i1.35775 background the main roles of nurses are not only to inform about the disease and treatment of the patient but also to establish an effective therapeutic relationship to address concerns, and provide empathy, comfort, and support. this issue is very prominent in newborn intensive care units (nicus) and doubles the importance of empathetic communication between nurses and parents and promoting empathy skills in nurses working in nicus. aims the aim of this study was to investigate the effect of empathy-enabling programs on nurses' empathy and nurse-parent communication from the perspective of nurses. methods this cluster randomized trial (crt) study was performed with the participation of 64 nurses working in nicus by convenience sampling method. the participants in both groups completed a three-part pre-test questionnaire: a) demographic, b) empathy and c) nurse-parent communication. the intervention was held as online training sessions in the bigbluebutton. the empathy-enabling program was in the form of two-hour interactive lectures on the topic of empathy and empathetic communica tion skills, in addition to videos, video clips, readings, and practicing scenarios. discussions were conducted for the intervention group and the control group did not receive any training. finally, participants in both groups completed the post-tests questionnaires again immediately and one month after the intervention. data were then analyzed using an independent t-test, repeated measures analysis of variance, and pearson correlation coefficient test using spss software version 16. results the results of the independent t-test showed that the mean score of nurse-parent empathy before and immediately after the intervention in the two groups was not statistically significant, but one month after the intervention this difference in the two groups of control (100.96±13.31) and intervention (110.08±15.07) was statistically significant (p = 0.018). also, the results of the analysis of variance with repeated measures did not show a statistically significant difference in the empathy score of the control group during different times, but for the mean nurse-parent empathy score during different times in the intervention group, this difference was significant (p = 0.032). in addition, the results of the independent t-test revealed that the mean score of nurse-parent communication before, immediately and one month after the intervention was not significantly different between the control and intervention groups. also, the results of the analysis of variance with repeated measures during different times did not show a statistically significant difference for the intervention group in terms of nurse-parent communication score. however, the results of the pearson correlation coefficient test showed a significant positive linear relationship between nicu nurses’ empathy scores and nurse-parent communication scores, at three times (p<0.001, r = 0.779). relevance to nidcap the nidcap model of care is one of the current priorities of the neonatal health office in the ministry of health in iran and many other countries that emphasize the increasing presence of parents in nicus and support for them by staff. parents are one of the essential components of the nidcap model and need empathetic communication. conclusion: based on the findings, the importance of teaching empathetic communication and the role of empathy in nurse-parent communication, should be more prominent. as the importance of the presence and support of parents in nicus implementing the nidcap model of care, researchers are recommending the use of practical methods to recognize empathetic communication challenges and teach empathy to nurses despite the coronavirus (covid-19) pandemic crisis and the subsequent possible challenges in nurse-parent communication. also, the authors recommend that empathetic communication skills should be included in formal and informal training programs for nurses and nursing students working in newborn intensive care units. the effect of the empathy enabling program on the nurses’ empathy and nurse-parent communication in the newborn intensive care unit 2025 • developmental observer • 3 in this issue, we feature articles that explore nidcap training across diverse settings. dalia silbertstein shares her reflections on the nidcap advanced practicum (ap) in spanish and english, challenging us to consider new perspectives on training approaches. hannah dalrymple offers insights from the viewpoint of a medical practitioner during her ap, guiding us through the challenges and triumphs of her experience. jeffery alberts challenges us to consider the hot topic of delirium in the nicu. angela gregoraci contributes a thoughtful piece on implementing broader aspects of individualised developmental care based on the nidcap model. she highlights various strategies to support parents and staff, enriching our understanding of how this model can be applied. oleksandra balyasna, a mother from ukraine, shares her journey and recommendations for supporting parents. continuing our ongoing feature introducing nfi members, this issue profiles julia giesen. alongside the profile, we are privileged to share julia’s evocative poetry inspired by her experience with the assessment of preterm infant behaviour (apib). we also take a moment to say farewell and express deep gratitude to gretchen lawhon, who is stepping down from the editorial team. gretchen has been a foundational member of the developmental observer since its launch in 2007. her dedication and contributions have been extraordinary. thank you, gretchen, for your enduring commitment and wisdom. we welcome livia nagy-bonnard to the editorial team as the family voices column co-editor. livia brings a wealth of experience and a strong commitment to family-centred care. as always, i welcome suggestions for features, content, and potential reviewers. please don’t hesitate to contact me— i would love to hear from you. kaye spence am facnn senior editor – developmental observer, adjunct associate professor australasian nidcap training centre/ university of western sydney editorial doi: 10.14434/do.v18i2.41636 new voices, lasting legacies jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. lívia nagy-bonnard, is founder and vice-president of the melletted a helyem egyesület association for preterm babies in hungary. livia is a patient expert for the european patients' academy on therapeutic innovation, a member of the global foundation for care of newborn infants, and a member of the parent advisory board and is a member of the family advisory council of the nfi. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master and apib master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board 2025 • developmental observer • 23 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 based communication rooted in patient and parent narratives, they collaborate to enhance the well-being of infants, families, healthcare professionals, and hospital communities alike. by nurturing a reciprocal care approach, nicu parent leaders contribute to the restoration and improvement of healthcare systems that once supported them during their own critical journeys. background kangaroo mother care (kmc) is an integral part of neonatal care, with its benefits to babies and families well documented. the position in which the parent holds her baby in kc, is mostly determined by maternal preference in the newborn intensive care unit (nicu). this study aimed to assess whether there is any differences to the babies cerebral oxygen levels, based on the two usual maternal positioning practiced in nicu at cork university maternity hospital (cumh) (30° or 60° incline position) and if either maternal position is more optimal for performing kmc. methods single centre cross-over randomised controlled trial in a tertiary newborn intensive care unit. infants with a minimum corrected gestational age of 28 weeks and minimum 600 grams were included. participants were randomly assigned to commence kmc, with their mother laying at either a 30° or 60° angle. the primary outcome measure was the median cerebral near-infrared spectroscopy (nirs) values between the two positional angles. near-infrared spectroscopy (nirs) oxygen saturation monitoring was chosen as it provides non-invasive, real time, continuous, tissue specific measurements of cerebral oxygen saturation. nirs monitoring can detect cerebral hypoxia, even when other monitors do not show signs of clinical deterioration.1 secondary outcomes were median infant peripheral saturations, median infant heart rates and numbers of significant bradycardia or desaturation episodes during kmc intervention. the results were analysed using the non-parametric wilcoxon signed rank test. results twenty participants were included in the final analysis: median gestational age (ga) at birth was 28+1 weeks (range: 23+2 to 32+6 weeks) and median birth weight was 0.985kg (range: 0.620kg to 2kg). there were no statistically significant differences (p = 0.810) between the median nirs values at 30° (median rso2 = 67.5, iqr = 58.3 – 73.8) and 60° (median rso2 = 68, iqr = 60.5 – 76). there were no statistically significant difference in the median peripheral saturations (p = 1), or median heart rates (p = 0.662) between infants held skin-toskin at 30° or 60° positions. conclusion results indicate that maternal positioning at a 30° or 60° incline did not have a significant impact on cerebral oxygenation values in very preterm infants furthermore either position was associated with the infant’s clinical stability. evidence robustly supports implementation of kmc to improve outcomes for the infant and families. relevance for nidcap as nidcap professionals, when supporting the families in our care with kmc we have to ensure our recommendations are researched based and supporting the best possible outcomes for the infant. reference: 1. vesoulis za, sharp dp, lalos n, swofford dp, chock vy. cerebral near-infrared spectroscopy use in neonates: current perspectives. research and reports in neonatology. 2024;14:8595. https://doi.org/10.2147/rrn.s408536 investigating the effect of held position during kangaroo care on physiological parameters of premature infants: a randomised controlled trial vaughan s1, murphy s1, stapleton i1,2, walsh bh1,2, natchimuthu k1, dempsey e 1,2 1department of neonatology, cork university maternity hospital, cork, ireland 2irish centre for maternal and child health research (infant) centre, cork university maternity hospital, cork, ireland doi:10.14434/do.v18i1.40898 developmental observer 20 23 | v o l 1 6 | n o . 3 the official publication of the nidcap® federation international a philosophy….can help us choose the best approach from an ethical point of view, such as the philosophy of person/ family-centered care —jacques sizun 10.14434/do.v16i3.36574 inside translating data on brain ............... 1 development into practice editorial .............................................................. 2 assessment of preterm ..................... 6 infants' behavior family voices ............................................. 10 science desk .............................................. 12 nidcap leader profile ........................ 14 global perspective ............................... 16 french polynesia publications ................................................. 18 34th nidcap trainers meeting ..... 21 nidcap on the web ............................ 22 nidcap training centers .............. 24 o ne of the goals of the neonatal teams is to support and protect the developing brain in the newborn intensive care unit (nicu), as the baby only has ‘one brain for life’.1 medical treatments, such as antenatal steroids and magnesium sulfate, have been shown to be effective in preventing brain damage in preterm infants. in parallel, environmental and behavioral strategies have been proposed under the generic term of ‘developmental care’ or ‘brain care’. developmental care is an emerging science and needs to be as evidence-based as possible so that healthcare providers are in a position to choose the best strategies for care, and in order for healthcare teams to be trained effectively, and parents and families to be provided with the best and most comprehensive information available. brain plasticity is ‘the ability of the nervous system to change its activity in response to intrinsic or extrinsic stimuli by reorganizing its structure, functions, or connections’.2 brain plasticity is an opportunity for the newborn, as it offers a chance for rehabilitation after brain damage. brain plasticity is also a challenge: an early hostile environment could alter the steps of brain development, such as synaptogenesis. in case of prematurity, synaptogenesis occurs while infants are hospitalized in the newborn intensive care unit. this article focusses on the effects, as described in recent systematic reviews, translating data on brain development into practice doi: 10.14434/do.v16i3.36565 (continued on p.2) jacques sizun, md french nidcap center, toulouse, france a summary of the presentation given at the 33rd annual nidcap trainers meeting in bad bol, germany 2022 2 • 2023 • developmental observer the influence of nidcap is steadily increasing, as evident from the comprehensive body of work it encompasses. in this edition, jacques sizun presents compelling proof of nidcap's efficacy by examining current research and practical applications. notably, there has been a surge in publications citing nidcap's principles across multiple languages, underpinning its growing global recognition. the path of our global outreach remains unwavering. the nidcap federation international, driven by dedicated members, continues to propel the frontiers of this approach. through leadership, we are privileged to embark on journeys of discovery with our valued members. an insightful introduction to monique oude reimer-van kilsdonk hailing from the netherlands, offers a glimpse of our diverse membership. joy browne enriches our understanding of apib through a survey of our members, providing valuable insights that deepen our appreciation of its implementation. a pivotal facet of the nfi is our community of family members. nina nikolova's poignant account from bulgaria exemplifies how adversity can be the catalyst for assisting fellow families. i invite the members and readers of the developmental observer to share their journeys with developmental care. we warmly welcome your reflections on training, practice, interesting case studies, and the invaluable lessons drawn from personal experiences. your contributions stand to strengthen the developmental observer and the information to move developmental care forward. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia of some approaches aimed at preventing the negative impact of frequent stressors on brain development in the nicu. the stressors are sleep deprivation, pain, mother-child separation, and sensory dysstimulation. stressors in the nicu sleep deprivation animal studies, mostly conducted on rodents, have provided useful insights with regard to sleep deprivation.3 these studies have shown that sleep deprivation may result in: oxidative stress, neuroinflammation via chronic microglial activation, and the accumulation of the abnormal proteins p-tau and amyloid-β in the cerebral cortex. these studies have also shown a neurogenesis decline via complement activation, which alters the balance of fragile x-mental retardation protein expression.3 in addition, the impact of chronic sleep deprivation on behavioral development has been demonstrated. sare et al4 found shortand long-term changes in behaviors of sleep-deprived mice, measured by activity in an open field arena. males demonstrated decreased sociability and increased repetitive behaviors. this data from preclinical studies show that sleep deprivation in the neonatal period has long-lasting behavioral changes, possibly modulated by gender. pain a meta-analysis by steinbauer et al5 concluded that neonatal pain has a large effect on neuronal cell death in rodents. the higher number of neonatal pain events was significantly associated with increased neuronal cell death, increased anxiety, and depressant-like behavior. boggini et al6 summarized the impact of pain on preterm infants’ brain development demonstrated by mri studies. a volume reduction of white and gray matter structures at neonatal and school ages is associated with early postnatal pain exposure. however, there is a possible bias, as the most severe clinical conditions are associated with higher exposure to painful procedures. mother-child separation maternal separation, an early stressful experience, can negatively impact the newborn’s nociceptive system development and pain responses at different levels7 (table 1). epigenetic mechanisms are implicated in the long-term effects of this early life stress that could also impact the next generation. sensory stimuli during prenatal development in mammals, the sensory systems do not become functional at the same time, but rather in a specific and invariant sequence: first tactile, then vestibular > chemical > auditory > visual.8 this differential timing of sensory system onset could benefit the earlier developing sensory systems as it allows them to develop without competition or interference from later developing sensory systems. in the case of preterm birth, the sensory stimuli are numerous, intense, simultaneous, chaotic, and physically different from those observed in utero.9 this could negatively impact synaptogeneditorial cover image by emmanuel angelicas doi: 10.14434/dov16i3.36574 (continued on p. 3) 2023 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist and a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board esis. according to bourgeois, ‘experimental models provide an additional example showing that a perturbation at an early neurodevelopmental stage may have a late and long-lasting effect of disorganization despite an apparently normal intermediate period’.10 the research data shows evidence for the importance of prevention of pain, stress, mother-child separation and inappropriate stimulation in the nicu. what is the evidence for the strategies that reduce these stressors? strategies for reducing stress sleep support strategies a systematic review found that swaddled preterm newborns arouse less and sleep longer.11 swaddling stimulates sleep continuity, as shown under laboratory conditions and in descriptive studies. the effect is most consistent in periods of quiet sleep (qs), but not always consistent during rapid eye movement (rem) sleep. table 1: overview of maternal separation on the nociceptive system [adapted from melchior et al.7] gastro-intestinal tract dorsal root ganglion spinal cord higher brain centers increased permeability of the mucosal layer inflammation change in microbiota composition increased excitability of afferent neurons increased expression of nav 1.8 decreased expression of kv1.2 increased activity of superficial and deeper layers changes in neurotrophic factors expression differential activation of the pain matrix alteration of descending controls of pain central inflammation (continued on p.4) 4 • 2023 • developmental observer a cochrane review of non-nutritive sucking (nns) found four studies reported on behavioral states with different methods of reporting states.12 two studies reported no effect, one study reported the most frequent transition was from qs to drowsy for the nns group, and one study reported that sleep states were more frequent in the nns group. the impact of skin-to-skin on sleep in neonates has been clearly demonstrated.13 according to a review from the american academy of pediatrics,13 skin-to-skin increases frontal brain activity during both quiet and active sleep, supports a more mature sleep organization, with increased total and quiet sleep, decreased rem sleep and arousals from sleep, and improves sleep cycling. therefore, the best strategy to protect sleep is to encourage parents to be present in the nicu and to provide extensive skin-to-skin for their infant. in a study of infants receiving regular care versus developmental care practices (covering the incubator, decreasing environmental noise, using supportive bedding, and promoting state transition by hand swaddling, non-nutritive sucking, or grasping), sleep time was increased both in as and qs states.14 in a systematic review of randomized control studies on the effects of music therapy on premature infants,15 recorded music interventions were not associated with a significant effect on behavioral states. live music interventions were shown to improve sleep in three out of four studies, however, behavioral states were defined with different non-validated tools. due to the heterogeneity of type and duration of interventions, gestational age of the subjects, and outcome measures, there was not enough evidence to recommend music therapy. pain control strategies numerous clinical trials and meta-analyses have demonstrated the efficacy of non-pharmacological interventions on the behavioral expression of pain in newborns: swaddling, flexed position, non-nutritive sucking, oral sucrose, breastfeeding or mother’s milk, and skin-to-skin. association and/or superiority of interventions are less studied.16 more trials studying the impact of these interventions on the cortical response and the effect of structured parent involvement are needed. maternal separation strategies new world health organization (who) guidelines advise that kangaroo mother care should start immediately after preterm birth without an initial period in an incubator.17 these recommendations are based on recent trials demonstrating the positive impact of very early skin-to-skin on survival or cardiorespiratory stabilization.18,19 mother-newborn couplet care is considered the best strategy to support the zero-separation concept. however, the current evidence is scarce.20 the stockholm neonatal family centered care study demonstrated a 5.3-day reduction in total length of stay and a reduced risk of moderate-to-severe bronchopulmonary dysplasia in the couplet-care group.21 believing that all these interventions could be integrated with an evidence-based global approach, roué et al collaborators identified eight principles that do not need more research before routine use.22 these include free 24-hour parental access, pain management, environmental influences, support of skin-to-skin, and sleep protection. science, philosophy, and human rights while the scientific evidence is strong, science alone cannot guide all aspects of care for hospitalized newborns. a philosophy ‘a theory that acts as a guiding principle for behavior’ can also help us choose the best approaches from an ethical point of view, such as the philosophy of person/family-centered care. in this case, scientific evidence is not then necessary. instead, the ethical reflection, both individually and as a group, can inspire and enrich the approach. moreover, in a study concerning the participation of nicu parents in medical rounds, some parents argued that it was not a philosophical question, but just the expression of human rights, their ‘right’ to be present, and their ‘right’ to participate in the decisions concerning their baby.23 although science is an important factor in determining best practice, the respect of human rights is also very important. guidelines in order to put the science and philosophy to practice it is necessary to have access to the data and for clear guidelines/ recommendations/standards to be formulated and followed. many guidelines are easily accessible and can guide high quality care in the nicu. gap between research and practice despite the existence of scientific evidence and easily accessible recommendations from national or international agencies and organizations, a significant gap exists between knowledge and practice. an example is a multisite survey across 13 nicus in paris about procedural pain in newborns.24,25 one nicu used non-pharmacological interventions for painful procedures only 2.4% of the time, whereas another nicu used these strategies 81% of the time. they also measured the difference in pain control during the day and the night and found that the babies were more protected from pain during the day than at night. the only difference was parental presence. there is high evidence for the importance of parental presence, yet implementation is lacking. why is there such a difference between these units given they all have access to the same research? another study, the french epipage study26 showed that there was little range in difference across units on medical interventions, but there was a large difference across units in the use of behavioral strategies. it was also shown that there was no significant difference between the cluster of infants who received intensive medical intervention and those who received more behavioral interventions. although there is a high level of research on the benefits of 2023 • developmental observer • 5 behavioral strategies there is great difference in the implementation of these strategies which has an effect on the comfort and care of the baby and ultimately on the baby’s outcome. nidcap training and implementation of brain-care practices the french epipage study gives us information on the implementation of medical and nursing practices such as skin-to-skin, breastfeeding support, and pain control, and the association with professional education and training.26,27 the authors observed large unit-level variations not explained by differences in infants’ characteristics across units, but possibly explained by neurodevelopmental care policies and training. the nidcap training compared with no training was significantly associated with early kangaroo-mother-care (kmc) initiation: [or, 3.5; 95% ci, 1.8–7.0] and sufficient perceived maternal information on infants’ pain [aor (95% ci) 2.6 (1.7–4.1)].26,27 there has been much evidence on the effectiveness of nidcap on the infants’ outcome, but this was one of the first studies to show the influence of nidcap training on evidence based care practices. how can we explain this? dominique haumont identified ten points where nidcap impacts early developmental care, including assessment of pain, kangaroo care, and sleep organization.28 the tenth point identified nidcap training as a tool for change. nidcap is not a prescribed protocol, instead nidcap implementation is said to be ‘process-guided’: a continuous process requiring flexible procedures and not procedurally-based attitudes. nidcap is also ‘relationship-based’ as it provides a new way of thinking about our relationships with the babies, the parents, and our colleagues. the third aspect is ‘system-oriented’ thinking as a change in any part of the system has an effect on the whole system.29 conclusion • research highlights the vulnerability of the developing brain in hospitalized newborns. • developmental care practices are evidence-based. • a research-practice gap exists. • nidcap could bridge this gap. references 1. amiel-tison c, stewart a. the newborn infant: one brain for life. inserm edition, paris 1994. 2. mateos-aparicio p, rodríguez-moreno a. the impact of studying brain plasticity. front cell neurosci 2019; 13:66. doi: 10.3389/fncel.2019.00066 3. alrousan g, hassan a, pillai aa, atrooz f, salim s. early life sleep deprivation and brain development: insights from human and animal studies. front neurosci. 2022 16:833786. doi: 10.3389/fnins.2022.833786. 4. saré rm, levine m, hildreth c, picchioni d, smith cb. chronic sleep restriction during development can lead to long-lasting behavioral effects. physiol behav. 2016 155:208-17. doi: 10.1016/j.physbeh.2015.12.019. 5. steinbauer p, monje fj, kothgassner o, goreis a, eva c, wildner b, schned h, deindl p, seki d, berger a, olischar m, giordano v. the consequences of neonatal pain, stress and opiate administration in animal models: an extensive meta-analysis concerning neuronal cell death, motor and behavioral outcomes. neurosci biobehav rev. 2022 137:104661. doi: 10.1016/j.neubiorev.2022.104661. 6. boggini t, pozzoli s, schiavolin p, erario r, mosca f, brambilla p, fumagalli m. cumulative procedural pain and brain development in very preterm infants: a systematic review of clinical and preclinical studies. neurosci biobehav rev. 2021 123:320-336. doi: 10.1016/j. neubiorev.2020.12.016. 7. melchior m, kuhn p, poisbeau p. the burden of early life stress on the nociceptive system development and pain responses. eur j neurosci. 2022 55(9-10):2216-2241. doi: 10.1111/ ejn.15153. 8. lickliter r. the influence of prenatal experience on behavioral and social development: the benefits and limitations of an animal model. dev psychopathol. 2018 30(3):871-880. doi: 10.1017/s0954579418000640. 9. kuhn p, dillenseger l, langlet c et al. environnement en unités de soins intensifs et soins de développement centrés sur l’enfant et sa famille. in j. sizun, b. guillois, c tscherning, p kuhn, g thiriez (eds). soins de développement en période néonatale. de la recherche à la pratique. lavoisier médecine, paris 2022; pp 53-60. 10. bourgeois jp. synaptogenesis in the neocortex of the newborn: the ultimate frontier for individuation? in: h. lagercrantz, m hanson, p evrard , c rodeck (eds). the newborn brain: neurosciences and clinical applications, cambridge university press 2002. pp 91-11. 11. van sleuwen be, engelberts ac, boere-boonekamp mm, kuis w, schulpen tw, l'hoir mp. swaddling: a systematic review. pediatrics. 2007 oct;120(4):e1097-106. doi: 10.1542/ peds.2006-2083. 12. foster jp, psaila k, patterson t. non‐nutritive sucking for increasing physiologic stability and nutrition in preterm infants. cochrane database of systematic reviews. 2016; 10(10):cd001071. 13. baley j; committee on fetus and newborn. skin-to-skin care for term and preterm infants in the neonatal icu. pediatrics. 2015 136(3):596-9. doi: 10.1542/peds.2015-2335. 14. bertelle v, mabin d, adrien j, sizun j. sleep of preterm neonates under developmental care or regular environmental conditions. early hum dev. 2005 81(7):595-600. doi: 10.1016/j. earlhumdev.2005.01.008. 15. van der heijden mj, oliai araghi s, jeekel j, reiss ik, hunink mg, van dijk m. do hospitalized premature infants benefit from music interventions? a systematic review of randomized controlled trials. plos one. 2016 11(9):e0161848. doi: 10.1371/journal. pone.0161848. 16. pillai riddell rr, bucsea o, shiff i et al. non-pharmacological management of infant and young child procedural pain. cochrane database syst rev. 2023; 6(6):cd006275. 17. https://www.who.int/news/item/15-11-2022-who-advises-immediate-skin-to-skin-care-forsurvival-of-small-and-preterm-babies 18. who immediate kmc study group. immediate "kangaroo mother care" and survival of infants with low birth weight. n engl j med 2021; 384:2028-2038. doi: 10.1056/ nejmoa2026486. 19. linnér a, lode kolz k, klemming s, bergman n, lilliesköld s, markhus pike h, westrup b, rettedal s, jonas w. immediate skin-to-skin contact may have beneficial effects on the cardiorespiratory stabilisation in very preterm infants. acta paediatr. 2022 111(8):15071514. doi: 10.1111/apa.16371. 20. klemming s, lilliesköld s, westrup b. mother-newborn couplet care from theory to practice to ensure zero separation for all newborns. acta paediatr. 2021 110(11):2951-2957. doi: 10.1111/apa.15997. 21. ortenstrand a, westrup b, broström eb, sarman i, akerström s, brune t, lindberg l, waldenström u. the stockholm neonatal family centered care study: effects on length of stay and infant morbidity. pediatrics. 2010 125(2):e278-85. doi: 10.1542/peds.2009-1511. 22. roué jm, kuhn p, lopez maestro m, maastrup ra, mitanchez d, westrup b, sizun j. eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit. arch dis child fetal neonatal ed. 2017 102(4):f364-f368. doi: 10.1136/ archdischild-2016-312180. 23. abdel-latif me, boswell d, broom m, smith j, davis d. parental presence on neonatal intensive care unit clinical bedside rounds: randomised trial and focus group discussion. archives of disease in childhood-fetal and neonatal edition 2015;100(3):f203-9. 24. carbajal r, rousset a, danan c, coquery s, nolent p, et al. epidemiology and treatment of painful procedures in neonates in intensive care units. jama. 2008 jul 2;300(1):60-70. doi: 10.1001/jama.300.1.60. 25. guedj r, danan c, daoud p, zupan v, renolleau s. does neonatal pain management in intensive care units differ between night and day? an observational study. bmj open. 2014 4(2):e004086. doi: 10.1136/bmjopen-2013-004086. 26. pierrat v, coquelin a, cuttini m, khoshnood b, glorieux i; epipage-2 neurodevelopmental care writing group. translating neurodevelopmental care policies into practice: the experience of neonatal icus in france-the epipage-2 cohort study. pediatr crit care med. 2016 oct;17(10):957-967. doi: 10.1097/pcc.0000000000000914. 27. pierrat v, marchand-martin l, durrmeyer x, et al. neurodevelopmental care study group of epipage -2. perceived maternal information on premature infant's pain during hospital ization: the french epipage-2 national cohort study. pediatr res 2020;87(1):153-162. 28. haumont d. nidcap and developmental care. journal of pediatric and neonatal individualized medicine (jpnim), 3(2), e030240. 29. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. semin perinatol. 1997 21(3):178-89. doi: 10.1016/s0146-0005(97)80062-6. 6 • 2023 • developmental observer in the nidcap world, there is no achievement more rewarding than that of becoming an apib (assessment of preterm infants' behavior) professional and trainer. the apib,1,2 has a reputation for a detailed, challenging-to-learn yet unparalleled assessment, providing insight into the baby’s capabilities and voice.3 its approach and systematic elicitation of a baby’s responses to increasingly complex questions reveal optimal individualized information about their competencies. the apib provides a feeling of delight when it tells us about babies’ experiences. parents marvel at the insights elicited by the administration of the apib and what we professionals bring from the exam that helps them “see” their baby. learning and applying findings from administering the apib can be rewarding to the examiner, other professionals, and parents. only a few apib trainers are available to provide support and insights into the exam. aside from nidcap trainers, for whom reliability in the apib is a required step, or researchers, who must be reliable to conduct studies, few individuals are considered “apib professionals”. the experiences of those apib professionals who have either been through the process or are in the process of learning the exam can provide insights into how the training was valued, how they are using the apib, and what recommendations for changes in training and implementation they offer. a survey was developed and sent to a variety of professionals and trainees to request their expertise and recommendations for consideration of changes and next steps for the apib. the survey was created to know how learning the apib has influenced the activities in which apib professionals engage. methods survey development the “apib practice and training survey” was developed in consultation with four current apib trainers. the following categories were identified to determine how the apib is currently being used: the impact on clinical work; the impact on working with babies and families; the benefit to nidcap training; the use in research; and, the use in supporting other professionals. further categories included: the requirement to become a nidcap trainer; the impact on training approaches; and, recommendations for apib training for other professionals. further details about the content of the survey can be accessed through the author. data collection each apib trainer provided a survey monkey link for the survey to those whom they had previously trained or those currently in training. thus, the survey was a convenient sample to elicit the views of those with a vested interest in the apib and who were willing to share their insights. direct responses to the questions were followed by a request for comments to each of the question offered. data analysis results were analyzed using descriptive statistics and qualitative descriptions with representative quotes from the respondents included. the results provided valuable information regarding training, clinical application to the nidcap work, and recommendations for the future of apib work. assessment of preterm infants’ behavior: insights from the field and projections for the future joy v. browne, phd, pcns, imh-e nidcap senior master trainer and apib trainer, new mexico, usa with appreciation and reflections of my journey in apib training and practice with dr. elsa sell, my apib trainer so long ago. elsa was an early neonatology game changer, custom breaker, and consistent advocate of the nidcap work. she braved the medical system to learn and teach the apib approach even before there was nidcap. here’s to you, elsa! doi: 10.14434/do.v16i3.36566 nadine griffiths and infant during an apib assessment 2023 • developmental observer • 7 findings description of participants fifteen globally represented apib professionals and apib professionals-in-training responded to the apib survey. most of the respondents were apib professionals who were trained between six years and “over 20” years ago. although data were collected anonymously, based on those who were interested in receiving the results, respondents were from canada, europe, australia, japan, and the united states. for 70% of apib professionals, they reported it took between one and five years to become reliable. clinical application to use of the apib after apib reliability, over 50% described not using the apib clinically but 25% use it “a great deal.” overall, responses indicated that regardless of administering the apib and scoring it, the knowledge and insights from learning apib were valuable. the apib is used both in the hospital before the apib discharge and in outpatient follow-up settings. modifications are frequent, including using it as a part of the neurological exam, at the baby’s bedside, in discharge guidelines, using parts of the exam as appropriate and not scoring the exam. clinical application to work with babies respondents indicated that it was easier to identify the baby’s strengths and challenges, organization, and disorganization that informed their daily assessments and interventions. several commented on how it solidified their understanding of states and co-regulation and helped them understand the synactive theory better. learning the apib also helped them see the details and intricacies that were not readily apparent in observations. all babies, even those who have severe brain injury, show neurobehavioral strengths. these strengths only become apparent if one goes at the babies’ pace, and provides facilitation, and ‘trust the baby’. clinical application to working with families the themes of how to work with babies and families centered on how the apib helps guide parents to understand the communication of their baby and how to bring out the best in their baby. it gives rise to how to communicate with the parents about how to optimally support their baby. learning the apib also promoted the value of supporting families which leads to greater competence and thus better outcomes for the baby. [learning the apib helps me] to support them to facilitate for the baby to be attentive and by this for them to reach those important moments of interaction. and i can guide the family to make it easier for them to interact with the baby. impact on nidcap training over 70% of the respondents say that learning the apib has enhanced the training they provide to others. overall themes included that the apib helped to solidify their nidcap observations and integration of the subsystems. it also provided a sound foundation for training, feeling more secure about observations, and confidence in making recommendations for care. (with nidcap) i learned about the strengths and weaknesses of babies only through observation, but with apib, i think i was able to gain a deeper understanding of the strengths and weaknesses of babies by actually touching them. using the apib in research of those who have used the apib in research, 65% are not currently using the apib, but over 30% either have used, plan to use, or are using the apib in research. respondents commented on how unlikely it is that they do research using the apib due to lack of funding, that the apib is not well known in research communities, and that doctoral work is limited due to the time to learn and intensity of the training. use of the apib in supporting other professionals or students about half of the respondents use the apib in training or supporting other professionals. the use of the apib in training nurses, therapists, residents, developmental specialists, therapists, neonatologists, and others is ongoing for many of the respondents. however, the actual exam or scoring is not typically done as much as using the knowledge gained through apib training. i demonstrate the apib evaluation. this opens the student's mind to the amazing insight that can be gained with appreciating each infant's emerging strength and competence as well as vulnerability. entry to apib exam room in japan 8 • 2023 • developmental observer recommendations regarding the training process a question that often comes up for those who have been trained in the apib is the utility of the training approach. because becoming reliable in the apib is currently a requirement to be a nidcap trainer, we asked if they would learn the apib if it were not required. about half of the respondents reported that they would be likely or very likely to learn it and half said they would be unlikely or very unlikely to learn it. respondents reported that they were unlikely to learn the apib due to the cost and time investment of training without understanding the benefit of learning the apib. they also mentioned training challenges of coordination with the limited number of apib trainers, especially if a master trainer was also involved. some concerns were raised about the lack of normed scores that support its use after reliability was achieved. i also don’t think that there is enough understanding amongst our nidcap colleagues [who have not done apib] about why it is necessary to know apib to be a nidcap trainer. recommendations for changes in the training approach the majority of respondents recommended support for apib training. specifically, themes included the development of updated materials and access through virtual distribution. many recommended the use of videos as well as frequent access to trainers through virtual assistance between face-to-face visits. some recommended the use of adult learning principles, breaking down sections for which to become reliable, and “workshops” to encourage frequent discussions about learning the apib. recommendations to lower the reliability expectations for clinical and training purposes were made. i see the challenge of teaching and learning apib as the length of time between sessions with the trainer. in between there may be quite a bit of virtual work that can be accomplished. i think training videos for the apib would be great as an adjunct to the in-person trainer and trainee sessions and would speed up the process to certification. respondents commented on whether they would recommend learning the apib to others if it is not a requirement to become a trainer about 40% would recommend learning it to others and 30% would not. themes referred to role designation and the utility of those roles, and that it is an insightful, useful instrument for professionals in the nicu. however, themes again included that the apib is not as practical as other instruments, it is not recognized as qualifying babies for services, trainers may not be available, the manual needs revision and it takes too much time to learn. it is a very useful clinical tool for those who work in the clinical nicu. it would be very helpful for neonatal clinicians to see how challenging it is for very preterm infants to do "ordinary baby things" when they are around term age..... usually if the baby can feed/be "fed" then they are passed off as "neurologically normal" by the untrained clinician. however: unless they want it for personal development, or to use it post discharge, but in the u.s., it is not an exam that is recognized to qualify infants for services. and often as a baby becomes stable enough to do the apib, they are discharged! i think if you are already nidcap certified, then use the nidcap throughout the hospitalization, unless you have a large population of older babies who are stable enough. overall comments about the apib, the training process, and the use of the apib the apib is a useful if not essential instrument to understand the experiences of the baby and using it along with other approaches might be beneficial. training is seen by respondents to be an absolute asset to working in a nicu. however, training approaches and reliability levels could be improved. some recommendations were made for a shorter scoring process, and, throughout training, peer support is essential. i am curious as to how many trainers actively use the apib, and how often. i wonder if we could reconsider this requirement and maybe create an abbreviated version focusing on the systems scores or have trainers learn to administer and score the apib but not require reliability but some other measure of competency. ghent training group learning the apib: eveline van dyk, angeline parez, anneleis keymeulin, julie verfaillie 2023 • developmental observer • 9 summary and recommendations for the way forward for the apib the responses to this informal survey indicate commitment and in-depth thinking about learning and implementing the apib. the small number of apib professionals and apib professionals-in-training included in the survey likely does not represent the entire population of people trained in the apib. their comments, however, provide much food for thought for not only the current application of the apib for babies and families but also for professional researchers and systems thinking. overall, the respondents recommend training in the apib as it is a powerful instrument for understanding the baby’s experience and for helping others appreciate the intricacies of the baby’s behavior. to strengthen the process of learning this instrument and its clinical application and use, a number of recommendations were made. respondents strongly advocated for revisions to the apib materials and for making training more available and accessible by using video instruction, electronic materials, and periodic apib workshops. with these changes, expectations for advancement in the nidcap hierarchy will allow for wider dissemination of the apib and nidcap work, acceptance into wider clinical use, and applicability for research. the apib is the most powerful tool i know. it would enhance any clinicians understanding of human behavior. for medical clinicians, the apib would help them come from a model of emerging competence versus the classical deficit model in medical training. references: 1. als, h, lester, bm, tronick, e, brazelton tb. towards a research instrument for the assessment of preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. 1. new york: plenum press; 1982. p. 35-63 2. als, h, lester, bm, tronick, e, brazelton tb. manual for the assessment preterm infants’ behavior (apib). in fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. 1. new york: plenum press; 1982. p. 65-132. 3. als h, butler s, kosta s, mcanulty g. the assessment of preterm infants' behavior (apib): furthering the understanding and measurement of neurodevelopmental competence in preterm and full-term infants. ment retard dev disabil res rev. 2005;11(1):94-102. doi: 10.1002/mrdd.20053 nidcap federation international board of directors and staff 2022–2023 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 10 • 2023 • developmental observer f a m i l y v o i c e s it was an amazing summer back in 2008 as we were on vacation with friends. after several intracytoplasmic sperm injection (icsi) procedures, i was pregnant with twins. we were expecting two little girls. i remember the first kicks and the butterflies in my belly. in week 21 of my pregnancy, my doctor saw a problem. there was a small amount of amniotic liquid, and he told me to go home and get a lot of bed rest. after a while, i started bleeding and went to the hospital. i was in shock with nightmarish fears. everything had changed within a few hours. my water broke and i feared this was the beginning of the end. my husband spent the night with me trying to comfort me. later he told me that he was going outside so that he could cry alone. i was not able to see the sadness in his eyes. i was in much pain and was laboring for 22 hours and then gave birth to two baby girls. i was only 24 weeks pregnant. one of my babies was 730 grams and the other 680 grams. after birth, the babies were taken away immediately, and i was not able to see them. at that time this was the practice in bulgaria. i went back to my room and fell asleep. i was so excited yet angry. i remember that the first thing i wanted when i woke up was to go home and start a new life. however, none of this has happened. feelings of shock and disbelief i was called into the nicu to see my babies. in the beginning, i was crying and in denial about having my babies. i was sure both had died. and then i saw the most perfect and beautiful babies in the incubator lying next to each other wearing white and pink caps. there were so many cables and wires, and i will always remember the terrible noise in the ward. after two days, my smallest baby died. she was too fragile and had no chance of survival. she never received a name or a birth certificate. she was considered biological rubbish and was taken away and discarded. after 7 days, according to bulgarian law, we gave a name to our only live child – alexandra. she spent five months in the nicu, and it was a huge fight for her. alexandra was in a private hospital, and i was going to see her every day. at that time, i was not allowed to breastfeed. after i gave birth, the doctor gave me pills to stop my milk. they believed there was no chance for my baby to survive! i was not allowed to do kangaroo care and was only allowed a few minutes next to the incubator. i hugged alexandra for the first time four months after her birth. it was a birthday present from my husband, but she was still attached to the breathing machine. it was a long treatment without success and we arranged for alexandra to be transferred to another hospital in israel. we paid a huge amount of money to hire an air ambulance because there were none in bulgaria and there are still none today in 2023. the ambulance came and the doctors realized she was in terrible condition and was intubated and would not transfer her in this condition. we were returned to the hospital after five hours. alexandra was getting worse day by day and three days after this situation, we were called to say goodbye to her. it was the worst moment in my life. i went to alexandra’s room for the last time and approached the incubator. her oxygen saturation was between 80 and 40. she was ready to go. my husband stayed until dawn. i was there, talking to her, touching her but her skin was cold. i knew it was over. i said to her – “my dear alexandra, now you can go. we will love you forever”. i waited for the scariest phone call which came at 4 pm. alexandra was gone. my whole world broke. i most families are not prepared for the possibility of a premature delivery, and the experience of having a premature or fragile infant can be overwhelming. providing information regarding prematurity prior to a baby’s delivery and during a baby’s course in the neonatal intensive care unit and through discharge to home is imperative, yet these resources are not always readily available and is in some countries, are very limited if available at all. in this mother’s story, we hear firsthand what it was like for her and her husband when their baby girls were delivered and how the lack of information about prematurity and resources for parents, as well as, their personal loss spurred her to take action and advocate for change. my personal loss provoked me to fight nina nikolova, bulgaria alexandra column editor: debra paul otr doi: 10.14434/do.v16i3.36567 2023 • developmental observer • 11 f a m i l y v o i c e s martin and joana at 6 months of age family photo taken in 2021. martin and joana are 11 years old was terrified and cried for days. alexandra was buried next to my grandmother. there is nothing worse than to bury a child before yourself. next story hope in 2010, i was pregnant again with twins – a boy and a girl. i was happy and at the same time terrified. i spent seven months on bed rest and medication, praying every day for a miracle to happen. on the 9th of september in 2008, my first set of twins were delivered, and my first baby died on the 11th of september. my second set of twins were born on the 11th of september 2010 at 29 weeks gestation. they were tiny little miracles. joana weighed 930 grams and martin 1170 grams. this time i was able to breastfeed, hug, and touch them every day. they spent three months in the hospital and came home healthy and were amazing little beings. the experience of having a baby born prematurely is difficult, sad, challenging, and amazing all at the same time. to be a parent of a premature baby is a thorny path that we must walk. i am more than happy and thankful today with my 12-year-old twins, and at the same time, i keep my love for my two little angels in my heart. a way forward-imagining and realizing big possibilities in 2012, i and two other mothers (together we had five premature babies), decided to establish the first and only bulgarian foundation for premature children – “our premature children foundation”. we are strong and we have changed so much in bulgaria including providing information about prematurity and how to support babies and families in the nicu. our foundation gives hope, and help to families, healthcare professionals, and babies. now there are family rooms in hospitals, we have created a resource booklet for parents, and we speak the same language with the doctors and healthcare professionals. our premature children foundation is the first non-governmental organization founded in support of bulgarian premature children and their families. our mission is to make a difference for those babies and make sure they have the best possible chance of survival and of reaching their full potential. what we do • raise awareness about preterm birth and possible complications. • partner with the government in terms of improving the situation of mothers and newborn babies in bulgaria as well as initiating constructive dialog with political leaders. • establish a network of experts, international and private sector organizations, officials, celebrities, media, business partners, and parents united by the idea of ensuring the best start in life for all premature and sick babies. • provide easy-to-understand information and make sure that all families have access to it so that we help them better understand the situation that they are dealing with. • facilitate medical and psychological support for affected families. • support families through our website, social media, publications, and events. • local support groups with volunteers and psychologists. • online consultation with psychologists. 12 • 2023 • developmental observer f r o m t h e s c i e n c e d e s k form and function. the phrase appears often in english, sometimes modified to specify that “form follows function”. this rubric is attributed to louis sullivan, a renowned architect of the late 19th century (the “father of the sky scraper”), especially famous as a mentor to frank lloyd wright, who professed the same rule. other industrial specialties, such as automobile and home product design, software formulations, robotics, evolutionary biology, paleontology, and more, tout the same. in such diverse areas and more, there is recognition of the intimate relations, at times the oneness, of form (structure) and function. here we turn our attention to the brain, specifically to the early developing brain. most of us understand the immaturity of the newborn human brain and the extra fragility and vulnerability of the incompletely-formed brain of prematurely born infants. the early-stage brain is often considered to be a major symbol, if not the actual target, of nidcap practice. understandably, many consider developmental care as “brain care” in which early brain growth and development is both protected and actively supported by providing physical, behavioral, and emotional contexts that channel healthy brain maturation. this is a kind of mantra in the world of developmental care, including among nidcap practitioners. it’s one thing to profess the special relation of developmental care on brain development. it is another thing to see it. but how can we look into a baby’s brain and see structural health and proper functional capabilities or the opposite? how do we see into the brain and its development? remarkably, there are now numerous ways “to image” the brain. in this article we offer a friendly guide to a popular imaging technology, magnetic resonance imaging (mri), and two of its most popular modalities: structural mri and functional mri (also known as fmri). we do this to take you a little deeper into the technical side of these methods. as we describe how they work, it will clarify what they tell us. understanding this should deepen your appreciation of the relations among science, engineering, and many important practices in contemporary health care – including those in the newborn intensive care unit. structural and functional mri are captured from the same device the giant tube in which a patient is positioned, where high tech hardware cranks, rumbles, and whirs. as you will note, the same electromagnetic processes are employed. yet structural mri displays form, while fmri displays function. despite the intimate interdependence of form and function, these two kinds of imaging are different in process and in use. first, let’s consider the structural mri as it is applied to brain imaging. mri technology acts on and takes measures from some of the smallest imaginable elements in the brain – the nucleus of individual hydrogen atoms, most of which are part of the water in and around all brain cells. the nucleus of a hydrogen atom is a single proton, and the hydrogen proton nucleus spins on its magnetic axis (imagine our planet earth spinning on its axis). when a brain is exposed to a strong magnetic field of an mri scanner, the protons’ axes shift from random orientations to lining up in a common orientation. while temporarily arranged in the same orientation, these charged axes create a directional magnetic vector. the scanner then adds radio waves that sweep over the magnetic vector, deflecting it and causing it to resonate. the dynamics of this nuclear magnetic resonance can be read as radio frequency (rf) pulses, and these are the signals that are captured, quantified, and spatially organized by computer wizardry into detailed gray scale images. with awesome precision, the strength of the magnetic field can be manipulated, and with each change in energy, the axes of nuclei at differrevealing form and function with brain imaging silvina l. ferradal, phd assistant professor, intelligent systems engineering, indiana university (usa) jeffrey r. alberts, phd professor, psychological and brain sciences, indiana university (usa) nfi science committee, associate editor for science doi: 10.14434/do.v16i3.36568 figure 1. a coronal view with structural mri of a full term infant full term infant 2023 • developmental observer • 13 f r o m t h e s c i e n c e d e s k ent depths are altered and measured. this produces images of successive “slices” across the brain, at any angle or depth! we can see form revealed, often in exquisite detail. figure 1 is an example. mri can be similarly applied all over the body and has revolutionized many kinds of medical diagnoses and analyses. again, structural mri reveals form. no physiology, no function is exposed. now we turn to fmri for brain imaging. function is “up front” in fmri thanks to the use of the magnetic properties of hemoglobin, depending on whether it is bound to oxygen molecules or not. when hemoglobin is bound to oxygen, it is repelled by magnetic fields (diagmagnetic) and when hemoglobin is unbound to oxygen, deoxyhemoglobin is attracted to magnetic fields (paramagnetic). increased neuronal firing in a particular area of the brain as part of its involvement in some sensory, motor, cognitive or physiological activity brings a concomitant increase in energy demand in the activated region. oxygen is an essential part of the biochemical pathways of such metabolic activity. the arteries and minute capillary branches that perfuse the networks of the activated neurons will respond to increases of local cellular activity by dilating. such dilation increases local blood flow to the active areas, thereby meeting the larger demands for oxygen and glucose. as with the structural mris described earlier, the effects of rf waves on the magnetic fields become the signal detected by the fmri. a special measure is used, called the blood-oxygenation level dependent response (or bold). the bold signal is a change (increase or decrease) in the proportion of oxyhemoglobin relative to deoxyhemoglobin. the contrast between the oxygenation from its prior baseline is the signal. in other words, this method does not directly reference neuronal activity, nor does it measure the oxygen itself. rather, the bold signal identifies areas where there are relative changes in oxygenated hemoglobin presumed to correspond to the immediate metabolic needs of the neurons. sophisticated analyses of these signals can achieve remarkable spatial resolution, mapping active areas about 1mm in size. these are displayed as maps of contrasting increases or decreases in regional activities, shown as graded changes in terms of color-coded nodes on a brain image. dynamic brain function can thus be spatially portrayed by area, by network, or by structure. figure 2 shows contrasting activities measured on the motor cortex and another image showing contrasting activities in a deeper, visual region. we have merely scratched the surface of the creative combination of physics, chemistry, cell physiology, and systems neuroscience that has yielded a variety of imaging modalities. beyond the technical tour de force represented in the use of magnetic resonance imaging is a panorama of applications. because disease conditions usually include an increase in water content, mri is suited for localizing some diseases. brain function depends on brain structures large and small. mri-based methods are used globally across the brain and microscopically on increasingly smaller scales of function. clinically, brain imaging is used to recognize early conditions of damage or malformation to predict outcomes and, significantly, to identify when and where therapeutic interventions can be applied. brain imaging has revolutionized basic research as well. the tens of thousands of research papers describing insights gleaned from seeing brain structures within a living body as well as mapping dynamic functions have shaped entire new areas of neuroscience. we hope to contribute at least one more developmental observer column on brain imaging, next focusing on applications suitable for newborns, including those born prematurely, for these babies present special challenges – and invite extra benefits from the knowledge gained on seeing the processes of brain development in the context of nidcap practice. unlike previous columns from the science desk, this one is not a commentary on a target article, but is an essay that in some ways, one side of a conversation. as such, we invite responses or questions. if this brief introduction to brain imaging inspires questions or comments, please contact us. we will gladly incorporate your input into a future essay – or simply answer your email. contact us at: silferra@iu.edu or alberts@indiana.edu. figure 2. functional maps for a group of term neonates as measured by fmri 14 • 2023 • developmental observer i am monique oude reimer-van kilsdonk and i live in the netherlands in a town called barendrecht. this small place is located 12 km from rotterdam where i work. usually, i cycle to work but when it rains, which i really hate, or snows, i take the train and metro and very occasionally the car. parking in rotterdam is very expensive, making the car my least favorite option. for almost 30 years i have worked at the sophia erasmus mc sophia children's hospital in the neonatology department. previously i was a neonatal intensive care nurse and since 2004 i have worked for nidcap as patient care advisor and nidcap trainer. i like to travel, which is an excellent combination with being a nidcap trainer. i like to read and walk, especially on long-distance trails. i used to bake birthday and wedding cakes as a hobby, yet this is a very time-consuming hobby and i no longer have time for it due to my workload. i will pick it up again when i retire. my nidcap journey it was sometime in 1998 that i first heard about nidcap. the department was conducting a study on developmental care and looking at interventions for prematurely born babies. the research showed that nidcap would be the best fit for our department and our patient population. staff could apply for nidcap training. three people were given the opportunity to do the nidcap training. after a lot of thought and discussion which i found daunting, i was accepted much to my delight. although i have experienced ups and downs in recent years, i have never regretted this choice. in 2000, i started nidcap training under the guidance of nidcap master trainer agneta kleberg. i had no idea what to expect and was anxious that everything had to be done in english. my english was not very good at the time, and i found it challenging! fortunately, i was able to start with two other colleagues. we were very much in support of each other and we could always turn to our nidcap trainer. her humanity, but certainly also her extensive knowledge, really helped me to complete the nidcap training and she is still a role model to me. after my nidcap certification, outside of my hours as a nurse, i was able to perform nidcap observations on the unit one day a week. nidcap trainer dr. nikk conneman joined our department in 2004 which gave us the opportunity to open a nidcap training center, the sophia nidcap training centre, rotterdam. soon i was able to spend more hours on nidcap observations, implementation, and supporting babies and their parents. after a few years, my workdays changed to one day a week as a neonatology nurse and four days a week for nidcap. because keeping track of the technical aspects of such an intensive department requires a lot, i decided at some point to dedicate myself completely to nidcap. first my title was nidcap consultant and now this position has changed to ‘advisor patient care development-oriented care’. the work as a nidcap professional is much more than doing observations. we also plan care for the babies and guide parents and colleagues. in 2017, i took the step to become a nidcap trainer under the guidance of dr. agneta kleberg and dr. joy browne. i felt privileged to be trained by these two remarkable women, increasing my knowledge and skills through their guidance and feedback. for the apib part of the training, i collaborated with the professionals in toulouse, france, and look back on that time with great pleasure. i have been a senior nidcap trainer now for two years. a step that dr. heidelise als assigned to me just before she died. my passion my passion has fluctuated in recent years. seeing parents grow their parenthood has always encouraged me to persevere. i think it's fantastic to guide parents in this process, not only to see how they slowly recognize their infant's behavior and how they react to it, but also how empowered they become at times when they feel that caring for their infant is not the very best without developmental care. in recent years, we have started treating younger and younger newborns. seeing the strengths these newborns can show us, no matter how small, makes me proud. it really touches me to see that hand that still manages to go towards the mouth and that cautious attempt to open an eye. in recent years, the passion for providing education has been added to my role. it is quite rewarding to see the wonnidcap leader profile monique oude reimer-van kilsdonk monique oude reimer-van kilsdonk doi: 10.14434/dov16i3.36569 2023 • developmental observer • 15 der on the face of a student when they see and hear why we do nidcap and their responsibility for it, fueling their passion to eventually work unconditionally for that infant and that parent. of course, there have been times in the last 20 years when i've thought ‘i'm quitting’. frustration, overload, misunderstanding, and not feeling heard were all feelings that occasionally i felt, yet there was always something that helped me through. with my colleague, nikk conneman, it was possible to regularly evaluate and reflect. i can also contact my nidcap colleagues, and vice versa. it helps to know that others also encounter such feelings. after discussion, you can usually get back to it. occasionally i have chosen to contact my master trainer. nidcap future when i look at the netherlands, i think nidcap will slowly expand. we provide a lot of foundational education and i’ve noticed that interest arises from there. it's slow, but i'm fine with that. we are a small country and besides the fact that it is important we have nidcap specialized care providers, i also think it is important that the foundation is good. we are working towards individualized developmentally oriented care becoming a permanent part of the nursing and medical training courses. globally, i also see promising growth of nidcap in europe, which comes from more foundational education. i personally think the future lies in having foundational developmentally oriented care in both nursing training and in the training for doctors. which educational program it will be is, i think, less important, so long as it is based on the synactive theory of development by heidelise als and perhaps endorsed by the nfi. a team could be put together to really look at the content. from that foundational education, some students could go on to more specialization, like nidcap training. my success what is success? i am proud that i have been able to create my own position, and work in an environment where individualized developmental care is included in the vision of the department and generally supported by the management team. i see parents spending more and more time in the department and we still successfully implement in small steps. i am proud of my colleagues who, despite the busy times in the department and staff shortages, continue to do everything they can to spread the word about nidcap and guide newborns, parents, and colleagues. i can always count on them when, due to circumstances, i must take a step back. they have taught me that delegating and trusting each other can only improve cooperation. i'm proud of that! my advice the advice i would give someone who is just starting their nidcap training is reflect! make sure there is someone in your area that you can turn to. that doesn't always have to be an official meeting, but just being able to talk and reflect can be very helpful – and be patient. there comes a time in your education when you ‘see the light’ and then really experience why you do it all. a wish of mine would be to have reflective processing groups worldwide. a small group where you can exchange your experiences with each other occasionally. groups for master trainers, trainers, professionals, and students. we face the same strengths worldwide, but certainly also the same challenges. sharing and learning from each other seems to me to be of enormous value. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 16 • 2023 • developmental observer french polynesia is an ‘overseas collectivity’, part of the french republic, located in the south pacific ocean, 8000km from australia and chile and 4000km from hawaii. it comprises 118 islands of which 76 are inhabited. these islands, with their heavenly landscape, extend over a maritime surface equivalent to europe. it has approximately 280,000 inhabitants, with a majority of polynesians ‘maohi’ (65%) and metis/mixed ‘demis’ (16%), a minority of caucasians ‘popâa’ (12%) or asians (5%), mostly from chinese origin. this population is young: 36% under 20 years old. the polynesian language (maori) remains widely used in daily life. the artistic heritage is rich in particular songs, dances, and the very old art of tattooing. culturally the child exists from procreation and not only from birth. there is a close continuity between the mother and the child: only one body. massage, breastfeeding, skin to skin are major elements of traditional polynesian care, the expression of bodies and emotions. the nuclear family is a recent concept. traditionally, the child is cared for at the beginning by the mother and then by the clan. the child can be designated "faamu" and then change his/her caregiver, on the decision of the grandmother or the group, in the event of failure of the mother, or traditionally to support grandparents. the child can also be given to a sister, a cousin, or a loved family member because this woman has no child. however, the infant must remain in contact with his original family. this tradition has been disrupted by european adoption of international children causing a break with the biological parents and a change of family name, creating loyalty issues for the developing child. the french polynesia hospital (chpf) is a modern hospital that opened in 2010. the neonatology department includes 24 intensive care beds and six neonatal beds within the maternity unit. it is the only level three neonatal center in polynesia. it stays in a relationship with the maternity units or perinatal centers in papeete, the capital, or in other archipelagos (society and the marquesas islands), some over 1400km from the chpf. the french polynesia hospital the neonatal care team includes six neonatologists, a nurse manager, 30 nurses and 19 assistant nurses, a psychologist, a therapist, a breastfeeding consultant, and a milk-bank manager. the nicu cares for preterm and full-term newborns and their families. newborns who require urgent neonatal surgery are transferred to auckland nicu (new zealand) or paris (france). the entire population has health insurance. the former medical directors, dr. micheline papouin and phippe kuo († 2019) were the initiators of the implementation of family-centered developmental care in the unit. the training began in 2004 with the support of the brest nidcap training center (dr. nathalie ratynski, pr. jacques sizun). that year, all medical and nursing staff benefited from a short training (two days), ‘introduction to developmental care’ focused on brain development, the importance of the early environment, the crucial role of parents, and system change. this training was renewed in 2005 and 2012. global perspective on developmental care french polynesia jacques sizun. french nidcap center, toulouse, france doi: 10.14434/dov16i3.36570 2023 • developmental observer • 17 developmental care training group in 2018 in 2019, dr. ratynski started fine 2 training, mainly via video conference and email exchange due to the covid pandemic. three neonatologists and three nurses have thus become fine 2 certified. one of the challenges in maintaining an optimal quality of developmental care is the high turnover of the nursing team. this underlines the need to train professionals very regularly. the current project is to train a trainer (temara mariteragi) to achieve certification both in nidcap and baby friendly hospital initiative. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2023. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 18 • 2023 • developmental observer akça k, kurudirek f. development of the individualised developmental care knowledge and attitude scale. appl nurs res. 2023 aug;72:151697. doi: 10.1016/j. apnr.2023.151697. epub 2023 jun 17. pmid: 37423682. al-matary a, al-matary m, delacena s, aljohani e. perception of parents in experiencing kangaroo care in saudi arabia. journal of neonatal nursing, 2023, 29(4):652-656. doi: 10.1016/j. jnn.2022.11.019. babaie m, nourian m, atashzadeh-shoorideh f, manoochehri h, nasiri m. patient safety culture in neonatal intensive care units: a qualitative content analysis. front public health. 2023 jan 20;11:1065522. doi: 10.3389/ fpubh.2023.1065522. pmid: 36741949; pmcid: pmc9895384. free pmc article bertoncelli n, lugli l, bedetti l, lucaccioni l, bianchini a, et al. parents’ experience in an italian nicu implementing nidcap-based care: a qualitative study. children (basel). 2022 dec 7;9(12):1917. doi: 10.3390/children9121917. pmid: 36553360; pmcid: pmc9776912. free pmc article da silva medeiros n, teixeira c, silva m, de oliveira l, do amaral rocha j, contim d. developmental care for preterm newborns: scoping review. [cuidado desenvolvimental para recém-nascidos pré-termos: revisão de escopo] revista de enfermagem do centro-oeste mineiro. 2023, 13. doi: 10.19175/recom. v13i0.4763. discenza d. nicu parents desperately need a “heather” after discharge day. neonatal netw. 2023 mar 1;42(2):99102. doi: 10.1891/nn.2022-0042. pmid: 36868803. elghany-abd el-fatah a, mahmoud a. effect of simulative heartbeat nest on improving physiological parameters, comfort and pain of preterm neonates at neonatal intensive care unit. journal of nursing science benha university. 2023, 4(1):1244-1261. doi:10.21608/jnsbu.2023.292105. erdoğan ç, turan t. evaluation of the effectiveness of digital game-based learning given to nursing students for the developmental care of infants in neonatal intensive care unit. comput inform nurs. 2023 may 1;41(5):300-308. doi: 10.1097/cin.0000000000000920. pmid: 37145853. fraser a, griffiths n, webb a. why reading matters. the development of a read-a-thon for neonatal intensive care units to encourage neonatal exposure to language. journal of neonatal nursing.2023, issn 1355-1841. https://doi. org/10.1016/j.jnn.2023.02.003. fujimoto t;藤本智久; get to know nidcap professionals [nidcap プロフェ ッショナルを知る] 小児看護= the japanese journal of child nursing, 2023; 46(1):69-62. fuller k, dewolfe t, coughlin m. the developmental participation skills assessment: development and content validation. neonatal netw. 2023 mar 1;42(2):72-80. doi: 10.1891/nn.20220029. pmid: 36868808. ghorbani f. open visitation in the nicu: nurses’ perspectives on barriers and facilitators. frontiers of nursing. 2023; 10(2):183-191. doi: https://doi. org/10.2478/fon-2023-0019 gibbs d, warren im. implementing infant and family-centred developmental care: exploring the impact of an innovative educational initiative. acta paediatr. 2023 feb;112(2):264-272. doi: 10.1111/ apa.16603. epub 2022 nov 30. pmid: 36415078. giordano v, fuiko r, witting a, unterasinger l, steinbauer p et al.. the impact of pandemic restrictive visiting policies on infant wellbeing in a nicu. pediatr res. 2023 sep;94(3):1098-1103. doi: 10.1038/s41390-023-02562-w. epub 2023 mar 23. pmid: 36959317; pmcid: pmc10034238. free pmc article gomes s, christoffel m, gomes a, rodrigues e, diniz m, et al. tradução e adaptação para o português da preterm infant breastfeeding behaviour scale. acta paulista de enfermagem. 2023, 36. https://doi.org/10.37689/acta-ape/2023ao001711. graf j, wetzel n, abele h, plappert c. bonding: promoting parent-child bonding in preterm infants nidcap as an interdisciplinary challenge. [bonding: förderung der eltern-kind-bindung bei frühgeborenen–nidcap als interdisziplinäre herausforderung] hebamme, 2023; 36 (1):56-62. doi: 10.1055/a-1990-6172. jyoti j, spence k, laing s, griffiths n, popat h. parents’ awareness and use of nonpharmacological methods to manage their baby’s procedural pain in a surgical neonatal intensive care unit. journal of neonatal nursing. 2023; 29 (1): 60-67. https://doi.org/10.1016/j. jnn.2022.02.005. kim js, kim hr. perception and educational needs of developmentally supportive care at-home for parents of pre-term newborns. healthcare (basel). 2023 jun 9;11(12):1700. doi: 10.3390/ healthcare11121700. pmid: 37372818; pmcid: pmc10298373. free pmc article selected publications 2023 kaye spence and maria maestro lopez. editorial team. doi: 10.14434/dov16i3.35671 the following is a selection of the 90 publications yielded from a search of pub med and google scholar using the keyword – nidcap in all languages. http://dx.doi.org/10.1016/j.jnn.2022.11.019 http://dx.doi.org/10.1016/j.jnn.2022.11.019 http://doi.org/10.19175/recom.v13i0.4763 http://doi.org/10.19175/recom.v13i0.4763 https://doi.org/10.21608/jnsbu.2023.292105 https://doi.org/10.21608/jnsbu.2023.292105 https://doi.org/10.2478/fon-2023-0019 https://doi.org/10.2478/fon-2023-0019 https://doi.org/10.37689/acta-ape/2023ao001711 https://doi.org/10.37689/acta-ape/2023ao001711 https://doi.org/10.1016/j.jnn.2022.02.005 https://doi.org/10.1016/j.jnn.2022.02.005 2023 • developmental observer • 19 landry ma, kumaran k, tyebkhan jm, levesque v, spinella m. mindful kangaroo care: mindfulness intervention for mothers during skin-to-skin care: a randomized control pilot study. bmc pregnancy childbirth. 2022 jan 15;22(1):35. doi: 10.1186/s12884-02104336-w. pmid: 35033000; pmcid: pmc8761274. free pmc article lee hn, park jh, cho h. developmentally supportive care among neonatal intensive care unit nurses in south korea: knowledge, perceived importance, perception, and perceived competence. adv neonatal care. 2023 jun 1;23(3):e60-e69. doi:10.1097/ anc.0000000000000943. epub 2021 oct 1. pmid: 34596087. liebowitz m, kramer kp, rogers ee. all care is brain care: neuro-focused quality improvement in the neonatal intensive care unit. clin perinatol. 2023 jun;50(2):399-420. doi: 10.1016/j. clp.2023.01.004. epub 2023 mar 9. pmid: 37201988. lisanti aj, vittner dj, peterson j, van bergen ah, miller ta, et al. developmental care pathway for hospitalised infants with chd: on behalf of the cardiac newborn neuroprotective network, a special interest group of the cardiac neurodevelopmental outcome collaborative. cardiol young. 2023 mar 30:1-18. doi: 10.1017/s1047951123000525. epub ahead of print. pmid: 36994672. lode-kolz k, hermansson c, linnér a, klemming s, hetland hb, et al. immediate skin-to-skin contact after birth ensures stable thermoregulation in very preterm infants in high-resource settings. acta paediatr. 2023 may;112(5):934-941. doi: 10.1111/ apa.16590. epub 2022 nov 18. pmid: 36333892. mann p, schmied v, psaila k, foster j. integrative review of cobedding of infant twins. j obstet gynecol neonatal nurs. 2023 mar;52(2):128-138. doi: 10.1016/j.jogn.2022.12.004. epub 2023 jan 23. pmid: 36702163. martínez-shaw ml, sánchez-sandoval y. effective stress intervention programs for parents of premature children: a systematic review. stress health. 2023 apr;39(2):236-254. doi: 10.1002/smi.3194. epub 2022 sep 3. pmid: 36029285. mason l, marufu tc,  warren i, et al.  interventions for supporting parents of infants requiring neonatal inter-hospital transport: a systematic review. nurs crit care.  2023; 1-14. doi:10.1111/nicc.12922 matsumoto n. 松本直美; activities of nidcap professionals [nidcap プロ フェッショナルの活動] 小児看護 = the japanese journal of child nursing, 2023; 46(1):94-99. mcnamara l, morgan c, novak i. interventions for motor disorders in high-risk neonates. clin perinatol. 2023 mar;50(1):121-155. doi: 10.1016/j. clp.2022.11.002. pmid: 36868702. montjaux-régis n, kuhn p, boimond n, moreau-gaudry i, gatbois e, et ai. hospitalisation à domicile pour les nouveau-nés. journal de pédiatrie et de puériculture. 2023; 36 (4): 133-140. doi: 10.1016/j.jpp.2023.05.002 moss e, kim k, dickinson k, gettis m. developmental care rounds: an initiative to improve nursing confidence and contributions at the bedside. neonatal netw. 2023 jan 1;42(1):37-44. doi: 10.1891/nn2022-0022. pmid: 36631259. muirhead r, bates a. does the implementation of multidisciplinary developmental care rounds increase the utilization of developmental caregiving interventions in the neonatal unit? j perinat neonatal nurs. 2023 apr-jun 01;37(2):153-163. doi: 10.1097/jpn.0000000000000725. pmid: 37102563. neves a, vilan a, soares h, almeida s, guimarães h. neurodevelopmental outcomes of premature infants born at ≤ 32 weeks of gestational age with post-hemorrhagic hydrocephalus treated with ventriculoperitoneal shunt. journal of pediatric and neonatal individualized medicine. 2023; 12(1): e120114-e120114. doi: 10.7363/120114. ochandorena-acha m, terradas-monllor m, lópez sala l, cazorla sánchez me, fornaguera marti m, et al. early physiotherapy intervention program for preterm infants and parents: a randomized, single-blind clinical trial. children (basel). 2022 jun 15;9(6):895. doi: 10.3390/children9060895. pmid: 35740832; pmcid: pmc9222162. oxenbøll collet m, albertsen h, egerod i. patient and family engagement in danish intensive care units: a national survey. nurs crit care. 2023 jul 4. doi: 10.1111/nicc.12947. epub ahead of print. pmid: 37402590. petersson må, benzein e, massoudi p, wåhlin i, persson c. parents’ experienc es of the significance of interpersonal interactions for becoming parents and a family during neonatal intensive care. j pediatr nurs. 2023 mar-apr;69:e1-e6. doi: 10.1016/j.pedn.2022.11.021. epub 2022 dec 5. pmid: 36481222. free pmc article poets cf, quante m. rethinking the pathophysiology of cardiorespiratory events in infants born preterm. j pediatr. 2023 jul 30:113651. doi: 10.1016/j. jpeds.2023.113651. epub ahead of print. pmid: 37527701. purwandari h, purnamasari md, mulyono wa, huang mc. preterm infant cues during breastfeeding and its measurement: a scoping review. belitung nurs j. 2023 jun 26;9(3):209-217. doi: 10.33546/ bnj.2445. pmid: 37492760; pmcid: pmc10363972. pysariev a, marushko y. practical aspects of teaching of neonatology to students of the medical and psychological faculty [ практичні аспекти викладання неонатології студентам медикопсихологічного факультету] modern pediatrics. ukraine. 2023; 2(130):121126. doi: 10.15574/sp.2023.130.121. ravarian a, rahmani n, soleimani f, sajedi f, noroozi m, et al. test of infant motor performance: cross-cultural adaptation, validity and reliability in persian infants. early hum dev. 2023 jul 22;184:105831. doi: 10.1016/j.earlhumdev.2023.105831. epub ahead of print. pmid: 37536018. https://doi.org/10.1111/nicc.12922 https://doi.org/10.1016/j.jpp.2023.05.002 https://doi.org/10.7363/120114 https://doi.org/10.15574/sp.2023.130.121 20 • 2023 • developmental observer robinette b, palokas m. promoting sleep and rest of infants using nonpharmacological interventions within the neonatal intensive care unit at children’s of mississippi. jbi evid implement. 2023 mar 1;21(1):78-86. doi: 10.1097/ xeb.0000000000000343. pmid: 36383919. séassau a, munos p, gire c, tosello b, carchon i. neonatal care unit interventions on preterm development. children (basel). 2023 jun 2;10(6):999. doi: 10.3390/children10060999. pmid: 37371231; pmcid: pmc10297482. free pmc article sizun j, kuhn p, tscherning c. care with child development and andré bullinger’s special look at prematurity. rev paul pediatr. 2023 may 15;41:e2022208. doi: 10.1590/1984-0462/2023/41/2022208. pmid: 37194842; pmcid: pmc10184996. free pmc article piris-borregas s, bellón-vaquerizo b, muñoz-lópez o, cuadrado-obregón n, melchor-muñoz p, et al. parents who spent more hours in intensive care units with their low birthweight newborn infant did not achieve autonomous care faster. acta paediatr. 2023 jun 18. doi: 10.1111/apa.16878. epub ahead of print. pmid: 37332100. thébaud v, dargentas m, sizun j. perceptions and expectations of parents regarding their position in a french nicu: quantitative and qualitative approaches. bmj open. 2022 jul 8;12(7):e052044. doi: 10.1136/bmjopen-2021-052044. pmid: 35803617; pmcid: pmc9272115. free pmc article vederhus bj, olsen ms, eide ge, storm h, guthe hj. alps-neo pain and stress assessment scale for neonates-a measure for procedural pain. acta paediatr. 2023 jun;112(6):1220-1225. doi: 10.1111/ apa.16759. epub 2023 mar 28. pmid: 36938888. wolfe kr, caprarola sd, clark c, davidson j, everitt md, et al. implementation of the cardiac inpatient neurodevelopmental care optimization (cinco) programme: an interdisciplinary, generalisable approach to inpatient neurodevelopmental care. cardiol young. 2023 apr 12:1-8. doi: 10.1017/ s1047951123000562. epub ahead of print. pmid: 37042605. vittner d, buehler d. gravens by design: nidcap nursery program: implementation of the nidcap model of care. neonatology today. 2023, august, 18 (8):71-75 a father's love nidcap care in the moment im ag e us ed w ith p er m iss io n 2023 • developmental observer • 21 nidcap: supporting and sustaining systems change 25, 26, 27*, october 2023 hyatt lodge, oak brook, illinois, usa hybrid meeting hosted by nidcap federation international (full meeting attendance is by invitation only) *friday, october 27, 2023 one day conference is open to all save the date open one-day conference nidcap:   supporting and sustaining systems change      ooppeenn oonnee--ddaayy ccoonnffeerreennccee friday, october 27, 8:00-5:30     speakers   jeffrey alberts, phd joy browne, phd nikk conneman, md mandy daly, acii, dldu saadieh masri, rn debra paul, otr elizabeth rogers, md jacques sizun, md keira sorrells       u    the last day of the 34th annual nidcap trainers meeting will be an open one-day conference. the purpose of the conference is to equip the learner with the knowledge to provide high level and evidence-based, developmentally supportive care to hospitalized infants and their families. visit our conference page for details: nidcap.org/27oct2023  (registration opens in june)    hyatt lodge 2815 jorie boulevard oak brook, illinois, usa hybrid meeting thelodge.hyatt.com   friday october 27 2023 http://nidcap.org/27oct2023 22 • 2023 • developmental observer n i d c a p o n t h e w e b nidcap training centers – facebook pages nidcap training centers continue to provide useful and informative information on their facebook pages. in this issue, we cover the broad range of educational activities promoted through these pages which continue to increase the information available on nidcap and developmental care. nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/nidcap https://www.facebook.com/profile.php?id=100069769423304 https://www.facebook.com/nidcap https://www.facebook.com/nidcap.sweden 2023 • developmental observer • 23 n i d c a p o n t h e w e b nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/groups/3103556629927874 https://www.facebook.com/profile.php?id=100063585520167 https://www.facebook.com/profile.php?id=100069429309444 https://www.facebook.com/nidcapaustralia 24 • 2023 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt contact: annette villaverde email: annette.villaverde@commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: nidcapchicago@gmail.com national nidcap training center boston children’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: nadine griffiths, mn and hannah dalrymple, mbbs contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattinger-jürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: tenna gladbo salmonsen, rn, mscn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: jacques sizun, md co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr 2023 • developmental observer • 25 n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: alberto berardi, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail.com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sant joan de déu barcelona nidcap training center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: agnes linnér, md, phd co-director: siri lilliesköld, rn, ms contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: beverley hicks, ot email: beverleyann.hicks@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: daliasil1960@gmail.com asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 6 • 2025 • developmental observer i recall when i began my nidcap training 12 years ago in barcelona alongside my mentors, graciela basso, josep perapoch, and fátima camba. i read the nursery assessment manual for the first time. this manual is a key instrument for evaluating the quality of a nursery’s developmental orientation and care implementation. at that time, our average summary scale score was 2.5 on a 1-5 rating, and we were concerned about how to move forward and achieve a higher score. how can we consistently promote the best shortand long-term development for all infants and families, while supporting care professionals and staff in ensuring their personal and professional growth to implement relationship-based care effectively? the answers came little by little... in 2020, i received a grant from the spanish neonatologist society and decided to travel to our european references in infant and family centered developmental care (ifcdc)1— the scandinavian countries. there, i met stina klemming, liisa lehtonen, and sari ahlqvist-björkroth, and they all demonstrated to me that a successful integration of a neuroprotective, developmental, and supportive care philosophy is possible. i learned that the best chance for successful implementation requires patience, endurance, and persistence, and that a broader strategy, which reviews unit culture, enablers, and barriers to sustainability, is essential.2 for ifcdc to be implemented effectively, we must focus our efforts and attention on a) understanding infants’ needs and rights through their behavioral communication and cues, giving the newborn a voice, as dr. als reminds us; b) supporting parental well-being and the infant’s development through parent engagement; c) changing hospital culture through healthcare staff training and support. the inclusion of family in neonatology program (infa-neo) was developed at trueta hospital in girona, a nidcap training center, to achieve these three main goals. our philosophy is the nidcap philosophy. we use individualized care plans based on developmental assessments of an infant’s behavior. a strength-based approach to healthcare recognizes the family as the constant in a child’s life. it focuses first on the positive attributes, capacities, and resources of the infant, family, and community, rather than solely focusing on deficits and needs. we were also inspired by other parenting interventions, such as close collaboration with parents,3 which routinely included parents in the observations to increase their knowledge and understanding of their baby’s cues, which affect their interactions. care recommendations were given to parents and shared with the healthcare team. meanwhile, the entire staff was trained to observe infants together with the parents through the fine program. trueta hospital is the reference hospital for the girona health region, attending 1,650 births annually, 56 of which are premature babies born at less than 32 weeks of gestation or less than 1,500 grams. implementing the nidcap model in the neonatology unit of trueta hospital started in 2016 in collaboration with vall d'hebron hospital in barcelona, which is a nidcap training center and part of the padeics-nidcap program network,4 an expert advisory program jointly promoted by the healthcare medical directors of the six hospitals affiliated with the catalan institute of health. in this context, the infa-neo intervention was developed in 2023, focusing on integrating families and providing individualized developmental care for high-risk babies. a specialized team leads the infa-neo program, comprising one full-time nidcap nurse, one part-time nidcap neonatologist, a psychologist, a pediatrician with fine 2 training, and a local parents' association representative. it consists of common elements for all families and more specialized interventions for the most vulnerable infants born before 30 weeks of gestation. the principal components of the intervention are: the infa-neo program: supporting infants and parents from the nidcap perspective angela gregoraci, phd, neonatologist and nidcap professional trueta hospital girona, spain doi: 10.14434/do.v18i2.41641 joint observation with a mother 2025 • developmental observer • 7 1. individualized developmental infant care: weekly joint observations of infants under 30 weeks with parents, focusing on understanding the infant’s behavior. 2. parental guidance and education: weekly reflective sessions with parents of premature infants <30 weeks, led by one nidcap professional. these sessions help parents learn to identify each infant's needs and characteristics, listen to parents’ perceptions about their infant, and provide them with a psychological space to create a shared care plan and understand their unique journey to becoming parents. the goal is to build collaboration, integrating parents' observations about their infant’s behavioral responses in caregiving decisions. the individual needs of infants and families, identified during these meetings, and the subsequent recommendations are shared with the staff to enhance their understanding and empathy for the parents' and infants’ experiences, ultimately improving how developmentally centered care is provided. 3. parental presence and caregiving: progressive and individualized parent coaching at the bedside teaches parents the skills required to provide many aspects of their infant’s care. additionally, parents are invited to attend weekly parental classroom meetings, where they are educated by various specialists on different subjects. families also have access to a library to encourage reading to their babies and a diary for entries about their baby’s progress. 4. parental support: the infa-neo team's psychologist provides individualized psychological support for parents and weekly family group therapy. 5. healthcare staff, time, and education: training and educational activities for all staff to foster a care culture in the neonatal intensive care unit (nicu) and enhance the healthcare team's skills in family and infant neurodevelopmental care. since may 2023, 48 infants born at or before 30 weeks' gestation have been born at our hospital. of these, 36 were included in the infa-neo program. of the 28 pregnant women admitted to the obstetric ward before delivery, 25 (89%) received the first structured, interdisciplinary-focused antenatal meeting. during their nicu admission, an average of three meetings per family were held, and five nidcap care recommendations were shared with the healthcare team per family. eighty-eight percent of infants had their first skin-to-skin contact with their parents within the first week, and 61% within the first 72 hours. initially, families with significant language barriers were excluded, but given the multicultural nature of our population, we could not deny them the program’s benefits. therefore, we adapted and included 25% of the families. forty-four percent of the infants discharged were on breast milk, and 20% received both breast milk and formula. eleven families (44%) were also included in the home-hospitalization program after an average of 80 days of admission (38 weeks of postmenstrual age). one hundred percent of families followed up with the interdisciplinary consultation. families said about the program: “we knew it would be a long stay due to our little one's prematurity, but we always had the support of the entire staff, and that helped us a lot to know how to manage the situation.” –ailany’s parents “it has been a tough experience, and day by day we have overcome our fear, and every day we have been more confident and more eager to reach the end of the road.” –darian’s parents “babies are put at the center and the rest are satellites, and that innovative and powerful approach that is nidcap always seeks the best for these little ones, including the importance of how to get families to also listen to them, to care for them, to also be protagonists in the process of their little ones' evolution.” –samara’s mother nevertheless, we still face many challenges. some parents have experienced variable levels of individualized support in the unit, probably because not all staff have completed the family and infant neurodevelopmental education (fine) 2 training and are not yet sensitive or receptive to the nidcap recommendations. inconsistent practices have been identified as a barrier to implementing ifdcc. inadequate facilities and unit design (our nicu is an open-bay unit without single-family rooms) make it difficult for families to be present. additionally, the unavailability of interpreters and a lack of empathy make communication between staff and families challenging. however, the cultural and attitudinal environment of ifcdc is more important than the physical environment. ifcdc can be successfully implemented, even in crowded nicus with older facilities, if the clinical team is committed and willing to invest in creative solutions.5 strong evidence shows that outcomes improve for infants reflective session with parents 8 • 2025 • developmental observer and families when families are involved in their hospitalized infant’s care.4 the nicu team cannot fully meet the infant’s physical and developmental needs during hospitalization or adequately prepare families to care for infants after discharge without strong family engagement. a developmentally supportive philosophy of care leads to better health outcomes, improved patient and family experiences of care, better clinician and staff satisfaction, and wiser allocation of resources when families are fully integrated into the care delivery system and treated as essential and irreplaceable partners in all aspects of healthcare delivery—from the bedside to the health system boardroom.2,5 the infa-neo program is a multidisciplinary intervention designed to support the development of pre-term infants, the parent-infant relationship, and the training of nicu staff throughout the entire pathway, including prenatal, birth, nicu, discharge, and follow-up care. it is still very young, but we are confident that it could facilitate the implementation of the nidcap model in our nicu and in other similar neonatal units. as dr. heidelise als6 said, “one infant and one family at a time; one nurse and one doctor at a time; one nicu and one hospital at a time; one city and one country at a time. this is the way to create the necessary change.” all quotes used with permission. references: 1. https://newborn-health-standards.org/standards/standards-english/infant-family-centred-developmental-care/ 2. griffiths n, spence k, loughran-fowlds a, westrup b. individualised developmental care for babies and parents in the nicu: evidence-based best practice guideline recommendations. early hum dev. 2019 dec;139:104840. doi: 10.1016/j.earlhumdev.2019.104840. epub 2019 aug 21. pmid: 31445697. 3. ahlqvist-björkroth s, axelin a, lehtonen l. close collaboration with parents-implementation and effectiveness. acta paediatr. 2025 apr;114(4):699-709. doi: 10.1111/apa.17210. epub 2024 mar 21. pmid: 38514910; pmcid: pmc11894782. 4. perapoch j, camba f, gregoraci a, anglès r, and the padeics-nidcap group. nidcap: always a journey. developmental observer. 2025, 18 (1): 20-21. doi: 10.14434/ do.v18i1.40895. 5. franck ls, axelin a, van veenendaal nr, bacchini f. improving neonatal intensive care unit quality and safety with family-centered care. clin perinatol. 2023 jun;50(2):449-472. doi: 10.1016/j.clp.2023.01.007. epub 2023 mar 21. pmid: 37201991. 6. https://nidcap.org/testimonials welcome new member of editorial team and co-editor of the family voices column w e are delighted to have livia nagy-bonnard join our editorial team on the developmental observer as co-editor of the family voices column. livia is founder and vice-president of the melletted a helyem egyesület association for preterm babies in hungary. she is the mother of four, including a son born prematurely at 27 weeks’ gestation who is now a young adult living with multiple disabilities. livia is a patient expert eupati (european patients' academy on therapeutic innovation) fellow, also a member of the gfcni (global foundation for care of newborn infants) european standards of care for newborn health project’s parent advisory board and is an nfi (nidcap federation international) family advisory council member. livia coordinates fine (family and infant neurodevelopmental education) training in hungary and received an efcni award for organising the adaptation of fine for online training in hungarian. she has completed fine 2 and is currently involved in a fine 3 quality improvement project on neonatal pain management at semmelweis university hospitals in hungary. livia brings a wealth of knowledge and connections to our team. lívia nagy-bonnard 6 • 2024 • developmental observer several pioneering neonatologists laid the foundation for practice with sick and preterm babies in intensive care. stanley graven was one of them. his contributions to the field in the 1960s and 70s were not those of new surgical procedures, identification of new treatments, or technological advances. instead, he was known for developing hospital systems that developed specialized neonatal units and resulted in decreased infant mortality. he further influenced care of babies by showing that education for the then basic level hospitals in delivery room care, control of glucose and temperature as well as early recognition and support for respiratory distress could significantly change outcomes for babies. the model he developed in the united states included regionalization and leveling of perinatal care. the current leveling of nicu designations by acuity continues to be a standard for nicus in the us and canada. dr. graven also chaired the development of standards for neonatology practice resulting in the "birth" of neonatology as a recognized subspecialty.1 dr. graven and his lifelong partner, mavis, worked to change other less recognized systems and practices typical in early nicus; those of restricting parents from being with their babies in intensive care. recognizing that outcomes of both mothers and babies could be enhanced when they were not separated in the perinatal period, they worked to change restrictive policies that they knew influenced early parent/child relationships. perhaps that was the birth of family centered care practice change as we know it today. dr. graven also recognized the impact of the physical/ sensory environment on babies in intensive care. at the same time—in the 1980s and 90s-there was increasing interest in the brain development of preterm babies, primarily in the area of provision of extra sensory stimulation which was designed to enhance outcomes. several prominent developmental psychologists and nurses began studies that added sensory stimulation, perceived to be optimal to support brain development.2-6 recognizing that additional sensory input for the developing newborn could be less than optimal, heidelise als.7-10 diverged from the typical stimulation based protocols and developed the individualized developmental care approach. recognizing the importance of the impact of the environment and caregiving on babies’ outcomes, and the diverse approaches to caregiving practices that were used in the 1980s, dr. graven convened a group of interprofessional leaders who gathered available information about the impact of intensive care environments on the physiology and development of preterm babies, he compiled a library of more than 30,000 related references that included both the physical environment and those related to optimal caregiving. two complimentary articles were published in the early 1990s: one on the sensory environment and one on optimal caregiving.11,12 these comprehensive reviews of early developmental research thus opened an expanded view of how-to best support both medical and developmental outcomes of babies and their families. since then, dr. graven and others have provided a host of articles and books documenting the importance of the sensory and caregiving environment on babies’ and families’ outcomes. although dr. graven’s professional publications, accomplishments and awards are too numerous to cite individually and can be found in his obituary. https://www.facebook.com/ stanleyngraven. several areas of dr. graven’s legacy have particular implications for the work of those of us in the nidcap community. • articulation of the science underlying the impact of the sensory environment and the importance of family inclusion in caregiving supported the provision of individualized developmental caregiving. it laid the groundwork for nicu design, practice change and the necessity of systems support. some of these essential articles have been co-authored by nidcap professionals13,14 • the expanding interest in the impact of the environment on babies and families in intensive care fostered the establishment of an annual internationally acclaimed gravens meeting on the environment of care for high risk infants and their families (now in its 37th year of attendance). many of the nidcap global community members have been included as faculty for these meetings. stanley n. graven, md: 1932-2024 a visionary for the care of babies and families joy v. browne doi:10.14434/do.v17i2.38135 stanley n. graven, md v a l e https://www.facebook.com/stanleyngraven https://www.facebook.com/stanleyngraven 2024 • developmental observer • 7 • with the support of dr. graven, several globally recognized collaborative efforts have been established to advance evidence-based standards for nicu caregiving. the standards for nicu design chaired by dr. robert white (now in its 10th revision)15 are globally recognized recommendations for optimal environments for babies and families. • the parallel standards, competencies and best practices for infant and family centered developmental care (ifcdc), chaired by dr. joy browne developed under the gravens umbrella. the standards established a guide for evidence based developmentally appropriate caregiving in intensive care, consistent with the values of individualized developmental care and systems change.16,17 dr. graven died on july 8th, 2024, in dallas, oregon. he was 92 years old. his wife and life love mavis carries on his spirit and his surviving children, as well as his grandchildren, nieces and nephews continue to share his generosity and love. his celebration of life took place in late september. it was a time of recognition of his legacy and his amazing contributions to babies, families and all of us who have benefitted from professional and personal relationships with him. until recently, he told us he was working on a research project, singing in a choir with mavis and thinking more about the development of spirituality in young children. his commitment to emphasizing the spiritual development of children leaves us with yet another challenge, that of understanding an aspect of caregiving not typically recognized in our professional roles. a number of those of us in the nidcap community have been both directly and indirectly influenced by dr. graven’s professional contributions, however, those activities do not capture his personal impact on all those with whom he has worked. in working with him on programs, writings, celebrations and more personal issues, his humility, humor, and pragmatic approaches contributed to the establishment of collaborative and supportive relationships. whether he was in the lead role on a task force meeting, at the podium in front of a large audience, or in a one-on-one conversation, he was able to provide a safe space for talking about challenging or novel issues. his gentle leadership included providing options that typically promoted compromise and collaboration. as a result, the quality of the resulting work reflected the contributions of all involved whether new ideas, controversial issues or vision of the future for care for babies and families. he was always approachable, had a funny joke to share, or a story that provided for insights and reflections, and always a benevolent twinkle in his eyes. the giants of our field are slowly disappearing, one by one, but they leave us their vision for “what could be” to challenge us to continue their work. dr. graven left us with work to be continued, and a vision of what could be for babies and families who experience intensive care. his loss leaves big shoes to fill, but also a solid foundation from which to walk forward. references 1. hartline j. historical perspectives: neonatology. secondary historical perspectives: neonatology 2022. https://www.aap.org/en/community/aap-sections/sonpm/tecan/career-development--leadership/exploring-and-evaluating-practices-of-neonatal-perinatal-medicine/ historical-perspectives/ 2. thoman eb, ingersoll ew, acebo c. premature infants seek rhythmic stimulation, and the experience facilitates neurobehavioral development. journal of developmental and behavioral pediatrics : jdbp 1991;12(1):11-8 [published online first: 1991/02/01]. 3. davis dh, thoman eb. the early social environment of premature and fullterm infants. early human development 1988;17(2-3):221-32. 4. scar-salapatek s, williams ml. early stimulation based on a deprivation construct. child development 1973;44(1):94-101 doi: https://doi.org/10.2307/1127684. 5. korner af, schneider p, forrest t. effects of vestibular-proprioceptive stimulation on the neurobehavioral development of preterm infants: a pilot study. neuropediatrics 1983;14(3):1705 doi: 10.1055/s-2008-1059573 [published online first: 1983/08/01]. 6. anderson j. sensory intervention with the preterm infant in the neonatal intensive care unit. am j occup ther 1986;40(1):19-26. 7. als h, duffy fh. the behavior of the premature infant. in: brazelton tb, lester bm, eds. new approaches to developmental screening of infants. new york, ny: elsevier science publishing co., inc., 1983:153-73. 8. als h, duffy fh. the behavior of the fetal newborn: theoretical considerations and practical suggestions for the use of the apib. in: waldstein a, gilderman d, taylor-hershel d, prestridge s, anderson i, eds. issues in neonatal care. chapel hill: westar, 1982:21-60. 9. als h. earliest intervention for preterm infants in the newborn intensive care unit. in: guralnick m, ed. the effectiveness of early intervention. baltimore: brookes publishing co., 1996:47-76. 10. als h. infant individuality: assessing patterns of very early development. in: call jd, galenson e, tyson rl, eds. frontiers of infant psychiatry. new york: basic books, 1983:363-78. 11. graven sn, bowen fwj, brooten d, et al. the high-risk infant environment. part 1. the role of the neonatal intensive care unit in the outcome of high-risk infants. journal of perinatology: official journal of the california perinatal association 1992;12(2):164-72. 12. graven sn, bowen fwj, brooten d, et al. the high-risk infant environment. part 2. the role of caregiving and the social environment. journal of perinatology: official journal of the california perinatal association 1992;12(3):267-75. 13. philbin mk, lickliter r, graven sn. sensory experience and the developing organism: a history of ideas and view to the future. journal of perinatology: official journal of the california perinatal association 2000;20(8 pt 2):s2-5. 14. graven sn, browne jv. visual development in the human fetus, infant, and young child. newborn and infant nursing reviews 2008;8(4):194-201. 15. altimier l, barton sa, bender j, et al. recommended standards for newborn icu design. journal of perinatology : official journal of the california perinatal association 2023;43(suppl 1):2-16 doi: 10.1038/s41372-023-01784-4 [published online first: 20231212]. 16. browne j, pcns iv i. gravens by design: standards, competencies and best practices for infant and family developmental care in intensive care: the time has come. today peer reviewed research, news and information 2006:26. 17. browne jv. how nicu design and infant and family-centered developmental care act synergistically to support babies and families. journal of perinatology : official journal of the california perinatal association 2023;43(suppl 1):55-58 doi: 10.1038/s41372-023-01746-w [published online first: 20231212]. dr heidelise als receiving the graven’s award https://www.aap.org/en/community/aap-sections/sonpm/tecan/career-development--leadership/exploring-and-evaluating-practices-of-neonatal-perinatal-medicine/historical-perspectives/ https://www.aap.org/en/community/aap-sections/sonpm/tecan/career-development--leadership/exploring-and-evaluating-practices-of-neonatal-perinatal-medicine/historical-perspectives/ https://www.aap.org/en/community/aap-sections/sonpm/tecan/career-development--leadership/exploring-and-evaluating-practices-of-neonatal-perinatal-medicine/historical-perspectives/ https://doi.org/10.2307/1127684 20 • 2025 • developmental observer p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 aim to describe the collaboration between the vall d’hebron-dr trueta nidcap training center and the catalan health system (ics) and how an expert advisory program was created to facilitate training across its six hospitals to improve outcomes for newborns and their families. methods and results year 2016 – start of collaboration. the padeics-nidcap expert group was created. padeics is an expert advisory program promoted jointly with the healthcare medical director of the six hospitals of the ics group (catalan institute of health) within the public health system, that care for over 270 very low birth weight babies every year in catalonia. the group consists of representatives of the administration, medical and nursing leaders of the units, nidcap professionals, other professionals promoting developmental care and family representatives from the “somprematurs” association. the main objective was to implement a newborn care model guided by nidcap. this is organized through quarterly meetings, leadership teams in each unit and the setting of annual objectives. during the 2016-2017 period, two very important actions were carried out: 1. a working day between families and professionals. during this meeting, nine areas of work are agreed upon, which focus on both training and the application of the model. 2. nidcap introductory 12-hour course, of theoretical and practical presentations and workshops. it is accredited in the catalan health system. a total of 380 professionals from the six hospitals participated. 2018-2023 – nidcap professional training • certified nidcap professionals in all six hospitals. • intermediate training, with an in-person course of 25 hours conducted in small groups. the pace is slow, the turnover of professionals matches our training capacity. • incorporating fine 2 into our training portfolio multiplies our training capacity. 2023 – start of the family inclusion program. the inclusion of families in neonatology (infa-neo) program started in girona, focusing on integrating families and providing individualized developmental care for high-risk babies, with a full-time nidcap nurse (montse reixach) and a part-time neonatologist (angela gregoraci). 2024 – more commitments from the administration. • commitment for 80% of professionals who work directly with babies and families to complete the fine 2 training, in all care shifts. • commitment to have a full-time nidcap professional position in all hospitals, responsible for training programs and implementing the care model. challenges • the difficulty of administrators to authorize expenses that are not equipment or pharmacological treatments. • the group does not include other hospitals that are not in the ics group. • the frequent turnover of healthcare professionals. strengths • the participation in the padeics program and the commitment of the medical and nursing managers of the units, which are part of the padeics-nidcap group. • having a training model (nidcap, fine) and implementation model (e.g. infa-neo) • collaboration with families and their associations (the president of somprematurs is part of the group). • the collaboration with other nidcap training centers such as “sant joan de déu” and “12 de octubre”. • the unconditional support of our senior nidcap master trainer, graciela basso and the nfi. nidcap: always a journey perapoch j1,2, camba f1,3, gregorari a1,2, anglès r4, and the padeics-nidcap group 1barcelona nidcap training center, catalonia, spain; 2hospital josep trueta, girona; 3hospital vall d’hebron, barcelona; 4ics hospitals healthcare medical director, barcelona padeics-nidcap group is formed by: solé e1, esqué g1, garcia j1, ortiz m1, bravo s1, duran a2, perapoch j2, reixach m2, simon n2, ezpeleta c3, ginovart g3, esteban md3, novell m3, tole d4, monterde l4, albújar m4, martinez mj4, ravés mm4, serrano r4, vernet s4, gros a5, ribes c5, quesada c5, camba f5, rodriguez r5, panisello c6, ribes c6, obando g6, rodriguez n6, arador a7, violant v8, farga e8. 1arnau de vilanova hospital, lleida; 2dr trueta hospital, girona; 3germans trias i pujol hospital, badalona; 4joan xxiii hospital, tarragona; 5vall d’hebron hospital, barcelona; 6verge de la cinta hospital, tortosa; 7padeics program assistant; 8university of barcelona; 9somprematurs association doi: 10.14434/do.v18i1.40895 2025 • developmental observer • 21 p o s t e r a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 4 conclusion / relevance to nidcap collaboration with the administration is the way to consolidate the model in all ics hospitals. together with the sant joan de deu group of hospitals, we provide care for over 70% of very premature babies in the catalan health system. our goal is to improve communication with the administration to establish nidcap as a standardized model across all units in catalonia, and hopefully spain. collaboration with the administration facilitates conducting research studies on the implementation of the model. this collaboration also supports initiatives aimed at improving training skills. we believe that sharing our experience with other regions of the state can serve as an example and an encouragement to promote similar programs. the impact of neurodevelopmental observations of preterm infants such as those offered in the nidcap program is still debated. by supporting oral feeding development, nidcap observations could enhance breast milk feeding at discharge of very preterm infants. aim to describe breast milk feeding at discharge among very preterm infants according to the level of nidcap implementation in neonatal units. materials and methods using the french national population-based epipage-2 cohort, implementation of nidcap in each of 11 nidcap neonatal units was defined as the proportion of very preterm infants (< 32 weeks’ gestation) who had at least one nidcap observation during hospitalization. breast milk feeding at discharge -partial, breast/bottle exclusive, and breast only exclusivewas evaluated after adjustment on maternal and neonatal characteristics, and unit policies to support lactating mothers. results among 569 very preterm infants included, 14% (78/569) had at least one observation during hospitalization. implementation was defined as low in nine units and high in two units, with 7% (extremes: 0-13%) and 86% (75 and 100%) of infants having at least one observation, respectively. breast milk feeding at discharge was reported in 55% of infants. in neonatal units with low nidcap implementation vs high, we observed 25%/6% of partial breast milk feeding at discharge, 16%/24% of breast/bottle exclusive, and 14%/28% of breast only exclusive. high nidcap implementation was associated with higher proportions of exclusive only breastbreast milk feeding at discharge: adjusted odds ratio 4.72 (95% ci 2.79-7.99). conclusion/relevance for nidcap the level of nidcap implementation was associated with higher rates of breast milk feeding at discharge exclusively at breast. investment of professionals and families in very preterm infants’ observation could be an effective strategy to support exclusive breast milk feeding at discharge in this vulnerable population. nidcap implementation in neonatal units and breast milk feeding at discharge: the epipage-2 cohort study mitha a1,2, kana g1, marchand l1, lescure s3, pierrat v1,4 1université paris cité, epidemiology and statistics research center/cress, obstetrical, perinatal and pediatric epidemiology research team (epopé), inserm, inrae, f-75004 paris, france. 2division of clinical epidemiology, department of medicine solna, karolinska institutet, se17176 stockholm, sweden 3department of neonatal medicine, toulouse university hospital, toulouse, france 4department of neonatalogy, chi créteil, f-94028 créteil, france doi: 10.14434/do.v18i1.40896 developmental observer 20 24 | v o l 1 7 | n o . 2 the official publication of the nidcap® federation international we are all connected; we mutually support, teach, learn from, and enrich one another. —heidelise als. doi:10.14434/do.v17i2.38122 inside supporting closeness...................... 1 building relationships, coinn 2024 editorial .............................................................. 2 becoming an advocate for ........... 7 newborn care in hungary profile of a nidcap leader ............. 10 family voices ............................................ 13 global perspective: qatar ............. 16 nidcap training centers ............... 20 worldwide: denmark nidcap on the web ............................ 26 nidcap training centers ............... 28 introduction in may of this year, aalborg, denmark, became a hub of international expertise as 275 passionate nurses from 28 countries convened. their mission was to showcase groundbreaking work and exchange insights at the forefront of newborn care. amidst the picturesque landscapes of denmark, these dedicated professionals explored topics through vivid oral presentations and a rich display of poster presentations. illuminating the event were keynote addresses tackling pivotal global issues in newborn care and neonatal nursing, underscoring the urgency of their shared mission. the overarching theme, "supporting closeness – building relationships," echoed the core principles of the nfi and nidcap philosophy, resonating deeply with attendees. throughout the conference, a diverse array of sessions explored the nuances of developmentally supportive care, highlighting the relentless pursuit of excellence in nurturing the most vulnerable members of our society. the organiser was the council of international neonatal nurses (coinn) which is an international organisation comprised of approximately 16 national organisations and over 4000 individual members. coinn’s vision is “unifying neonatal nurses globally” with a mission “to promote excellence in neonatal nursing and health outcomes for the infants and families nurses serve and to act as an international leader in development of professional standards of neonatal nursing.” many nidcap trainers and nidcap professionals attended the conference and presented their work on developmentally supporting closeness – building relationships, coinn 2024 doi:10.14434/do.v17i2.38128 (continued on p.2) tenna gladbo salmonsen, rn, mscn, danish nidcap training center, aahus, and kaye spence am facnn, australasian nidcap training centre. 2 • 2024 • developmental observer in this edition, we explore the multifaceted challenges confronting healthcare professionals as they care for hospitalized newborns and their families. the global crisis of infant mortality persists, particularly pronounced in developing nations where the shortage of nurses exacerbates the situation. considering these pressing concerns, it becomes imperative to explore avenues for support and collaboration. livia nagy bonnard's narrative underscores the influential role parents can play as advocates, as she shares her work to enhance newborn care in hungary. additionally, sophia gerassis sheds light on the enduring impact of siblings' experiences in the neonatal intensive care unit (nicu), offering valuable insights into familial dynamics during such challenging times. the commendable growth of the nidcap federation international (nfi) is an inspiration, with fatima clemente exemplifying exceptional leadership in advancing nidcap and developmental foundation programs. indeed, strong leadership is the cornerstone of nfi's important work, as evidenced by the collaborative efforts of two nidcap training centers in denmark, extending their global reach. bindu george's account offers a glimpse into the commendable initiatives underway in qatar, showcasing developmental care strategies and the requisite training to support them effectively. the dissemination of such initiatives underscores the expanding influence of nfi, as it endeavours to elevate the standard of care for hospitalized newborns worldwide, while simultaneously bolstering its professional membership. kaye spence am facnn senior editor – developmental observer adjunct associate professor / clinical nurse consultant australasian nidcap training centre / sydney children’s hospitals network / western sydney university / australia editorial focused topics. these were consistent with the conference themes and reinforced the focus of the nidcap federation international (nfi). key themes what struck us at this conference was the disparity between the developed world and the developing world. we were presented cover image by stina klemming, sweden doi 10.14434/do.v17i1.37037 spreading the word (continued on p.3) nidcap professionals and trainers at the coinn conference 2024 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. with a stark global contrast where the decrease in nurses, such as in africa was directly related to an increase in deaths in oneto five-year-olds. this has huge implications for poaching of staff from these countries to fill gaps in the failing systems in the developed world. it also made us think about the global reach of the nfi and ways that we as an organisation could help in these countries. it certainly calls for further discussion. the conference presented many opportunities for the pro-motion of developmental care practices and education, and it became clear how many of these strategies could be simply used in some african systems as well as other depleted areas such as india, se asia and eastern europe. keynote presentations an informative session was given by joy lawn, professor of maternal, reproductive and child health at the london school of hygiene & tropical medicine (lshtm). dr lawn spoke on the topic every newborn everywhere: how can we get neonatal nurses everywhere. she explained that while most women in africa now deliver their babies in health facilities, these hospitals lack the life‐saving technologies, equipment, and trained staff that are editorial board necessary to manage preterm babies and newborns in distress. over one million newborns die annually, 75% from preventable causes. together, south-east asia and sub-saharan africa account for 79% of the global burden of neonatal mortality. evidence has shown the importance of specialised neonatal nurses to improve the chances of newborns’ abilities to survive and thrive. yet, the global shortage of nurses was also estimated to be 5.9 million of whom 89% are needed in low to middle income countries (lmic) where the burden of neonatal mortality is particularly high (see fig 1, p.4). the availability and international distribution of nurses were a focus of the presentation by howard catton the ceo of the international council of nurses (icn). he is committed to ensure that the icn effectively represents nursing worldwide, advances the nursing profession, promotes the wellbeing of nurses and advocates for health in all policies. he painted a sobering picture where nursing is heading for a crisis with an estimated shortage of 5.7 million by 2030. he explained the high international mobility of the workforce as approximately 1 in 8 nurses are working in a country other than where they were born or trained. (continued on p.4) 4 • 2024 • developmental observer the projected nursing density in 2030 raises many concerns. countries in africa and southeast asia have a critical shortage which impacts on health care and the infant survival rates. countries in southern europe and eastern mediterranean have a challenge to increase the number and influence of nurses in these countries. what does this mean for the nfi? as we recruit more nurses into nidcap training and fine education we have a good opportunity to promote their work and their unique contributions to infant and family centred care. a strength is the partnership with parents and the nfi could promote this role-modelling to other countries. in figure 2 on page 5, the target countries are easily identified in the reds, pinks and lighter blue. the power of parents was showcased in the opening address by lívia bonnard nagy on the role of parents in the nicu and beyond. lívia is the co-founder, vice-president of right(s) beside you hungarian patient organization, fellow, efcni european standard of care for newborn health, nidcap member of family advisory council, fine (family and infant neurodevelopmental education) faculty member in hungary. her impressive biography and her emotive presentation captured the audience as she led us on her journey, as the mother of an extremely low birth weight infant. she shared with us how the experience of having a preterm infant still affects her family’s life, as she was not allowed to stay at the hospital or visit. particularly distressing was that she received no help with breastfeeding, parenting skills or with questions she had about her baby. she suggested using the parents as painkillers – be allowed to be present – to use the senses – touch my baby, smell my baby, hold my baby. she shared with us that 18 years later she is still a nicu mom, and despite many challenges her son is ultimately happy. from her experience she was driven to improve the education of all health care professional in hungary. her work has improved conditions for other families by educating nurses and starting fine training for parents, an innovative program. this keynote presentation provided an emotive start which put what we as neonatal nurses do into perspective. developmental care themes the coinn 24 conference was very inspiring on multiple levels. from a supportive developmental perspective there were several interesting and challenging presentations. for us, the challenge was to be present at all five parallel sessions, as there were many presentations under this theme. here are a few selected presentations. supporting parent-infant closeness in clinical care by anna axelin from turku, finland. anna reminded us of the importance of giving the best opportunities to support parents and infants to be together. she described the three steps of the path of parent-infant closeness in clinical care. maternity care do we support parental prenatal attachment and development of co-parenting, delivery – do we support immediate skin-toskin and initiating breastfeeding, and newborn care – do we practice family centered care (fcc) skin-to-skin care (ssc), couplet care, home care. she reinforced the need for support as attachment starts before delivery, maternal–fetal attachment, and how bonding and attachment are very important for the development of the infant-parent relationship. figure 1: global distribution of neonatal mortality (source un inter-agency group for child mortality estimation (2023)) 2024 • developmental observer • 5 stina klemming, nidcap trainer from sweden, presented a summary of the anticipated global impact of kangaroo mother care (kmc) and potential death prevention annually. the current impact of kmc is anticipated to prevent 10,000 global deaths, add the impact of scale up implementation prevents 150,000 deaths, further add the impact of community initiated kmc prevents 250,000, then add impact of immediate kmc research and the death prevention is 400,000. a global target for prevention is to distribute kmc with an implementation strategy to all countries. the nfi is in a position to endorse and promote current skin-to-skin programs and resources. the nfi kangaroo-a-thon is a start and perhaps next year each nidcap training centre could partner with a hospital in a developing country as a strategy of global outreach. with the figures above this could be a worthwhile collaboration. sofia augoustakis from rigshospitalet, copenhagen, denmark, presented her research on the duration of infant-parent skin-to-skin contact in neonatal wards: a danish nationwide cross-sectional survey. this study has highlighted the importance to measure some of the care we provide, we know caregiving has a great impact on parent-infant bonding and brain development. nadine griffiths, senior nidcap trainer from sydney, australia, presented her poster on the development of a screening process for parent depression and stress after discharge from a surgical nicu. her team found a multidisciplinary standardised screening protocol was feasible and effective in establishing referrals to services for families at risk. her findings that 24% of mothers and almost 42% of fathers reported depressive symptoms suggest screening should be extended to all families discharged from a nicu. this was one of many groundbreaking poster presentations at the conference. in the session sleep and neuroprotective care, jannie haaber, from the danish nidcap training and development center, copenhagen, dk and tenna gladbo salmonsen, from the danish nidcap training and development center, aarhus, denmark opened with the presentation burden of care – a fact – or is it? they took us on a short journey of the importance of brain development, development of the senses and the impact of the environment; how daily procedures and daily care can be an explosion of sensory stimulation and the crucial need for positive sensory regulation, and parental involvement. they reminded the audience of the importance of being able to identify the infants’ sleep and awake states to know when the infant is ready to interact, and with reference to heidelise als, why it is so important to be present and observe to understand the infants behaviour. another aspect of parental involvement in pain management was from alexandra ullsten, music therapist from sweden, who told us about parent delivered lullabies, when the infant is skin-to skin before, during and after a procedure. it is exciting to follow the study swepap, which is an rct. further the presentation was a part of a workshop – building relations to stop pain in the nicu with several presentations about pain management. marsha campbell yeo from halifax canada underlined the importance of having parents actively engaged in pain management. among other things, she told us about a figure 2: projection of nursing personnel density (source icn state of the world’s nursing 2020) 6 • 2024 • developmental observer website parenting pain away, which was developed to support parents and their families to feel confident to cooperate with health professionals in reducing their infants procedural pain. bonnie stevens, from toronto canada talked about implementation of pain management in newborn/preterm infants and how difficult it is but also how crucial it is to prevent pain and stress. in this discussion, she added the need for system changes requiring management level decisions to prevent pain and stress in newborn and preterm infants. an expert panel of speakers provided insight into the care of the extremely preterm infant < 25 weeks. we heard speakers from japan, miki konishi, akiku kuroda, ylva blomqvist and victoria karlsson from sweden. it is important to focus on this group of infants since they are immature, vulnerable and there are different ways to practice care. reflections from the session included having a "tiny baby unit" within the nicu to keep knowledge and practice to a few very dedicated nurses. 'the tiny baby collaborative' – an international research group comprised of clinicians and researchers dedicated to improving the lives of children born at ≤23 weeks’ gestation and their families foster collaboration and mutual learning among hospitals with exceptional outcomes for the most premature neonates. the goals are to identify and conduct research to improve care for the most premature neonates and their families. they share data on outcomes and practices among participating centers, and to compile evidenceand expert-based guidance related to the care of infants ≤23 weeks’ gestation. the overall impression is that there is a need to share knowledge about the smallest and most vulnerable infants from the very beginning of life. neonatal palliative care was presented by alex mancini schmidt from the uk. there was an emphasis on the importance of consistency between national guidelines (national network) concerning end of life or palliative care. the goal is to help parents when everything is uncertain and continue to develop the ability to observe what each infant needs in this very special situation. during the workshop, 'fathers in the nicu', the speakers anne brødsgaard and mette petersen from denmark and francine de montigny from canada gave us valuable insight as to why it is important to have a greater focus of fathers, when their infant is in the nicu. we need to make the fathers/partners feel important and remember to ask, what they need, and acknowledge the importance of both parents in the infants life and the process 'to become parents'. peer to peer support is worthwhile, father support groups are an example. in denmark a national study is the supported study – support for first-time fathers of preterm infants in early parenthood. we await the results. call to action attendance at this conference has triggered many issues that we feel the nfi may consider as we move forward with nidcap across the globe. three issues stood out for us: the power of skin-to-skin on closeness and brain development, the global issues threatening newborn care and survival in developing countries, and the need for a universal education program for developmentally supportive family and infant care. international coinn participants 2024 • developmental observer • 7 becoming an advocate for newborn care in hungary w hen did my ’patient expert’ journey begin? probably during my nursing education in the early 1990s, i was fortunate enough to try myself out in intensive care with all of the beauties and challenges within. but 10 years later i became a ’naive patient’. i never thought there could be such a deep, gut-wrenching, paralysing pain in every part of my body. i thought, this can't happen to me, i can’t give birth early, way too early. many women have thought that and sadly, many will continue to think that until the unthinkable happens. i remember standing in the hallway of the deserted maternity clinic in the evening. the smell of chemicals, a distant baby crying, snippets of conversations, a typical obstetric setting. in my hand i clutched the day's breastmilk. as i stood outside the neonatal intensive care unit (nicu) door i tried to recall how i got there. i was a hungarian mom and lived happily in the frenchswiss border, close to geneva with my french husband and 7-year-old little girl. i was pregnant with our second child. a 31-year-old mother, who did not smoke, nor drink, with a previous healthy pregnancy and a natural, uncomplicated pregnancy and birth. during the 25th week of my pregnancy, my gynaecologist authorized one last flight: he let me go for a two week vacation to take my daughter to visit our family in hungary. two days before our return to france i became unwell. first, i had a headache, then my legs and arms got heavy and swollen, all of a sudden, i was feeling extremely tired and i dragged myself into the closest hospital. i had pre-eclampsia. memories that triggered action i remember the emergency doctor who explained to my frightened husband, who was then 1300 km away from us, on the phone, what was happening to his wife and his unborn son. they would have to deliver the baby immediately. my son was born in the 27th week of pregnancy and weighed 890 grams at birth. i remember the moment when my son was born. i saw his tiny feet as a neonatologist was running away with him as he had no signs of life. my husband rushed to us from france. i will always remember the first time we met our son around 24 hours after his birth. i tried to prepare myself for the sight of my son, but you cannot prepare for this. five days after his birth, the hospital released me and i had to leave my baby there. alone. i was devastated. the nicu door will haunt me for the rest of my life. i was afraid of what was waiting for me behind that door. for the next 14 weeks, i stood in front of that door twice a day and pressed the bell. would they open quickly, or would i need to wait? if i had to wait, was it because something was going wrong on the other side of the door? was it my son? the doctors came by and often said some cliché like ‘two steps forward, one step back’ and then they left me alone. the visiting time for each infant was 20 minutes, twice a day. i insisted on calling the nicu every morning at the same time, i had my daily rituals. every day i wrote down every little detail in his baby journal, and also added one photo for every day. if anything happened, i knew i needed memories. i needed to prove his existence. often, i found myself not looking at my baby but at the monitors. i tried to think that this is not my son, to avoid getting too attached to him. i did not want to feel any pain, if he would not make it and he died. although everybody tried to convince me that i had to be happy as i had survived, i blamed myself for his preterm birth. i was a mother of two children, but what was the reality? one of them was 1300km away from me and the other one was locked down in a nicu, where i had to ask permission to see him. i couldn’t be a mother to any of my children, it was torture. i felt invisible in the hospital. the doctors and nurses were overworked and did not have time to support a mother who was depressed. i had no psychological help. each nurse cared for between six and seven infants in incubators, and there were one-two neonatologists each shift. lívia bonnard nagy, co-founder, vice-president right(s) beside you association (melletted a helyem egyesület), eupati (european patients' academy on therapeutic innovation) fellow doi:10.14434/do.v17i2.38135 undertaking an observation during fine 2 8 • 2024 • developmental observer at that time, i was confident and felt that my baby was in good hands. never, not for one minute did i question that my son and i did not receive the best treatment and care. now, in hindsight, i know how dangerous this situation was. i remember the exact day and the exact hour when my son started to breathe without any machine. at that moment he was born a second time, but i was not there. they told me on the phone. the moment when i could hold him in my arms for the first time is equally unforgettable. he was then 12 weeks old. there must be a better way eighteen years ago he went through traditional, and unfortunately outdated, non evidence-based neonatal care. i had two visits for 20 minutes each a day to be with my baby, who was i was told was ’ready’ to be visited. i could only look at him, i had to ask permission even to touch him or take a picture of him. the main reason was: as they say: to avoid infection. i imagined i had a biological bomb, planted in my head from the first moment i set foot at the nicu and it went on for 14 weeks. i was afraid to kiss my own child for a year. i did not let anyone to touch him beside his father and sister for a year! they were giving formula milk to my baby as my breastmilk dried up very quickly because of my stress, and misleading information. he received good old cluster care where his sleep cycles, pain and stress were ignored, he was positioned on his back without any support for his shoulders, legs or knees while he was in the incubator. then one morning, the staff told me i could take my son home. all of a sudden, he was lying there next to me in the bed, a little two-kilogram baby, who was on monitors only few hours before. i felt completely incompetent and did not dare to sleep for weeks. i was his monitor during the night: is he still breathing? how on earth could the nicu staff think i could possibly take care of this baby? is it really my baby because i still don’t feel it. and i knew about attachment and bonding as i already have an eight year old daughter. after my son got out of the nicu, i felt many things, but i missed the most important feeling: i did not feel like his mother. i felt more like a nurse and did not let anyone near him. when i fed him, i was wearing the green nicu uniform and a mask for weeks. we didn’t receive any diagnosis, only ‘this child got away with it’. no diagnosis means no prognosis it means go home and have a happy life. it took another two and a half months before we both could take a flight to go home, back to france. we learned that the french and swiss social system are extremely weak and do not have enough information or a good adviser so it is easy to slip out of the social system. during follow-up nobody took my worries, my comments seriously. my son’s development was extremely slow. we were followed in three different countries, but there was no consistency. becoming an advocate it took me two and a half years to learn how to become the voice of my child, to stand up for his rights and stand up for my rights as a mother. they kept repeating, he is an extremely preterm boy, why am i so impatient? after two and a half years we finally got a diagnosis. my son has periventricular leukomalacia (pvl) and cerebral palsy (cp), which equals a mentally and physically disabled child. therapies came in line, some were useless, some dramatically improved my son’s development day by day and changed the quality of his and my family`s life. some were recommended by the neurologist, some by the pediatrician. i received ideas from the parent group, from the internet, and google doctor became my best friend. at the beginning i did not question the scientific evidence of any of the interventions, most of them largely expensive and not paid or reimbursed by health insurance. results were coming little by little. my son started to walk and talk around the age of five, he became relatively independent and managed his daily routines. feeding was always an issue, and still is. if he finished his food, i doubled the portion. the first 10 years of his life this was my ‘mothermeter’. he started school in a special class and continued his studies in a special school adapted to his handicap. so, i had to give up my job, i became a full time social assistant to navigate between medical appointments, therapies, interventions, school, finance and insurance. what does it take to become a dedicated advocate and create the right(s) beside you association for premature babies in hungary? it took a traumatic birth and nicu experience with an extreme premature baby who weighed barely 600 grams in the first week and who, has to live with the consequences of his early arrival for the rest of his life. it took a minimum of one neonatologist (special admiration to dr. csaba nádor) who believed that with good patient-centered and family integrated care you can protect the brain and neurodevelopment of these babies. there needs at least one nicu nurse who believes that by involving parents, even better care can be provided and the baby will leave for home with after discharge 2024 • developmental observer • 9 competent parents. our association was founded in september 2015 with the aim of bringing together in a unique way doctors, health professionals, decision makers and ngos representing parents of premature babies to ensure that every baby born prematurely or sick has the best possible chance of survival with the best possible quality of life. to give everything i didn’t have 18 years ago, up-to-date, evidence-based information about premature birth-related diseases, professional help and social support. call to action as developmental care was not part of the nursing curriculum, the association strongly advocated to establish the fine (family and infant neurodevelopmental education) training as a basic education in every level iii nicu in hungary. with the help of volunteer neonatologists, ‘veteran parents’ whose child was born extremely preterm, we fully translated the educational materials and organised the trainings. these parents have been helping the international trainers, initially as translators, and now themselves involved in training part of the faculty. along the way we learned how to get finance for the training and we started to collaborate with industry partners. we have learned how to climb back through the window of the decision-makers when we are thrown out the door. there was a need for an evidence-based handbook specially for nicu nurses. we translated the neonatal nursing care handbook by carol kenner and judy wright lott. we started to advocate for the nicu nurses as we faced huge challenges, how to implement neurodevelopmental care on a daily basis. closed-system workplaces are typically teams that deal with life-and-death situations. their work, and the success of their work, depends on everyone knowing exactly what to do, and in what order they are maximally interdependent. we had to be aware of their mental health state and the workload they faced day by day. during these 18 years i have heard lots of stories from families like mine – throughout europe and around the world. we are not a special unique case. during these years i learned a lot about the neonatal practices at both domestic and international levels. finally, i dare to say out loud: my son did not get the best practice in hungary. france and switzerland failed during follow-up. was my son the unfortunate little boy who was born in the wrong country, in a wrong city or in a wrong nicu? was it my fault i couldn’t become a competent mother for my son, to stand up for his right and advocate for him correctly? today we know, i know that ‘every care is brain care’, every touch and word has lifelong consequences and we have to protect the brain of every preterm baby, but i wish i knew back then…. 18 years later mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 10 • 2024 • developmental observer p r o f i l e o f a n i d c a p l e a d e r heidelise als has profoundly influenced my professional and personal life. thank you for being my mentor and inspiration … "we are all connected; we mutually support, teach, learn from, and enrich one another" heidelise als i was born in the beautiful city of porto, portugal, a city steeped in history and culture. however, my early years were spent outside of porto and were incredibly rich and varied in experiences as i traversed the globe alongside my family. my “globetrotting journey” was a result of my father's career as a military officer, which took my family to different places, allowing us contact with diverse cultures, languages, and traditions. this period of my childhood left a lasting imprint on me and shaped my future perspective on life. it has not only broadened my horizons but also shaped my values, emphasizing the importance of empathy, understanding, and interconnectedness in our global community. i graduated in medicine at the university of porto and began working as a doctor at são joão university hospital. in my professional journey as a doctor, this multicultural foundation has proven to be an invaluable asset. it has enhanced my ability to collaborate and work in diverse environments. so as a young paediatrician, i had the curiosity and desire for varied experiences that led me to have opportunities beyond the familiar confines of porto as i undertook several months of hospital internships in london and paris. like any young doctor, i was drawn to state-of-the-art technologies that could enhance patient care. the latest advancements on mechanical ventilation captivated my attention in the first years of my career. my introduction to nidcap in the nineties, attending the french paediatric society meeting in reims, france, i chanced upon a workshop presented by an enthusiastic team from the university hospital of brest, led by professor jacques sizun. the topic presented, new approach to caring for infants, promised a shift in perspective toward understanding the language and behaviour of babies, with a focus on their development and family, caught my interest. this moment was really a “touchpoint” and marked a true turning point in my professional and personal journey. it challenged conventional medical approaches by placing a spotlight on infants’ behaviour and families, understanding of the infant's needs, and involving the family in the care process. reading infant behaviours was really a new concept for me, and this paradigm shift made a profound change in my approach to neonatology. embracing the principles introduced by the brest team, i began to view each newborn not just as a medical case but as a unique individual with their own language. the emphasis on family involvement also became a cornerstone, recognizing that the well-being of the infant is linked to the support and understanding provided by their family. this new philosophy of care not only revolutionized my professional practice in neonatology but also had a strong effect in my personal life. bringing nidcap to portugal as i continue my journey as a neonatologist, the lessons learned in france remain embedded in my practice. the fusion of cutting-edge technology with a compassionate, family-centered approach has become the hallmark of my commitment to the well-being and development of every newborn under my care. with madalena pacheco rn, a young neonatal nurse and now the head nurse of our nicu, we shared a common enthusiasm for enhancing our understanding of nidcap principles. together, and with the support from hercília guimarães, professor of pediatrics and chief of department of pediatrics faculty of medicine of porto university, neonatology service director, we began our nidcap journey in portugal. we successfully secured a scholarship from the calouste gulbenkian foundation to fund nidcap training which fatima clemente md senior consultant in neonatology in são joão university hospital são joão nidcap center director and trainer member of the nfi board of directors doi:10.14434/do.v17i2.38134 fatima clemente with nidcap founder heidelise als 2024 • developmental observer • 11 allowed our team to travel to boston and had the privilege to meet professor heidelise als and dr nikk conneman. in the year 2008, i was certified as a nidcap professional along with madalena pacheco rn, carla castro rn and ligia silva rn, neonatal nurse specialists and the first nidcap nurses certified in portugal. our team has expanded, now with eight nidcap professionals and six more in training, bringing together dedicated professionals who share our passion for enhancing the well-being of newborns and their families. with the support of dr graciela basso, who was crucial in the implementation and integration of nidcap care at the neonatology unit level and at the hospital system level, and even at the national level in portugal. with her vast experience and knowledge, she supported the training of our team and its expansion. we realized our dream in 2015: the inauguration of the são joão nidcap training center. this center became a place where our team's commitment to improving care for infants and families in portugal could develop. each member brought a unique set of skills and dedication to the table, contributing to a collaborative and supportive environment focused on the nidcap approach to newborn care. the future for developmental care and nidcap our shared team vision extended beyond nidcap professional certification – it was about continuous improvement in the care provided to newborns and their families. so, for the past few years, são joão nidcap training center has an important goal: the education in nidcap foundation courses like foundation for infant neurodevelopmental education (fine), providing the pathway for nidcap training and certification. in our portuguese experience with the multidisciplinary training of many professionals in the nicu team with fine training, it is the fundamental step to establish the foundations for nidcap training. it's essential for the team to "speak" the same language and to understand the process of a changing care philosophy under the synactive theory. through this approach, we intend to meet the evolving needs of the portuguese hospitals and nicu professionals. in the last three years with the financial support of the portuguese parent association, we have trained on developmental care and nidcap foundation with fine 1 and 2 more than 700 nicu professionals across all portugal, 17% of them are neonatologists. this multidisciplinary participation has an important impact on neonatal care in portugal, emphasizing the importance of individualized, family-centred approaches. another of our goals for the future is to initiate basic training in africa in portuguese-speaking countries: angola, mozambique, guinee-bissau, and cabo verde. the online training has opened a window of opportunity for decreased costs and the ability to reach more distant hospitals. family-centered care is not a reality in hospitals in africa. the need for families to be in the units 24/24h, to support breastfeeding, kangaroo care, and to support parents in caregiving, is crucial for the survival of premature babies. we intend to integrate developmental care through portugal's exchange programs that already exist with these countries. rewarding experiences my most successful professional experience is working with professionals from different portuguese nicus and sharing their journey in learning the language of the infant, caring for the infant, and partnering with families. it is a true privilege for me! each time, i am grateful to be able to work with excellent and motivated professionals who aim to improve their skills to meet the needs of families and their babies. in a period where we are experiencing a global crisis in national healthcare systems, where hospital resources are often directed towards other more technical aspects, it is surprising that we have so many individual requests for fine courses and nidcap training. this demonstrates the recognition of the importance of developmental care and the need for ongoing skill development to meet the demands of families and infants in increasingly complex situations like cardiac and surgical pathologies that often require specialized care but also special attention to developmental issues due to the complexity of their conditions to optimize outcomes. working with hospitalized infants can be challenging yet immensely rewarding. effective communication and collaboration among multidisciplinary teams is essential. therefore, as we work together providing the nidcap approach to comprehensive care, the individual needs of each infant and family are considered. it is not an easy task but remains one of our goals in our nicu in porto. advice for those doing nidcap training: • be open-minded! think of neonatal care from a global perspective and be ready to learn new concepts. you will move from a traditional task orientated model of care to one built on relationships that uses a reflective process. nidcap emphasizes an individualized approach to newborn care, it can be really challenging, but it will certainly be very rewarding. • build relationships! nidcap training encourages positive relationships, collaboration and communication among care providers, families, and other stakeholders such as scientific societies, parents associations and universities involved in the newborn's care. • seek mentorship! mentorship from your trainer but also from experienced nidcap professionals and other trainees. they can provide guidance, feedback, and support as you navigate the complexities of implementing nidcap principles in practice. • continuously reflect on your practice! seek opportunities for improvement. you are not alone on this journey. you are part of a global community that is organized within the nidcap federation international. you can participate 12 • 2024 • developmental observer in different nfi committees. you can share your skills and experiences and be part of workgroups, supporting the growth of our organization. take the initiative and contact the chairs of each committee. you'll find the contacts on the nfi website. • and finally, be patient with yourself! implementing nidcap care takes time and practice. be patient with yourself as you develop your skills and understanding. remember that every interaction with a newborn is an opportunity for growth and learning. remember it is a journey, and it requires time, but also dynamism and determination. build a team that supports each other. our sponsors dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. sponsor of the nfi and the 34th annual nidcap trainers meeting. dandle•lion medical, the leader in neurodevelopmental care, makes it easy to provide consistent, effective, evidence-based care for hospitalized babies. our patented positioning aids provide a womb-like experience while our education programs meet ongoing clinical needs. becoming part of our dandy pride of lions means providing the best care for your patients, support for your clinicians, and value for your organization. sponsor of the 34th annual nidcap trainers meeting issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2024. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 2024 • developmental observer • 13 f a m i l y v o i c e s i was two years old when my sister dimi was born on mother’s day, critically ill and premature at 30 weeks gestation with a 500-gram tumour in her chest. i would spend time with my family in the newborn intensive care unit (nicu) although i don’t remember this. i grew up as a sibling to a baby that was in the nicu, and over the years i found it hard watching my sister in pain and the trauma she and my parents faced. it was very challenging in those early years of my sister's life. my parents spent many hours at the hospital, and i stayed with my aunty and grandparents, who gave me a lot of support. while i was growing up, the experience of sharing dimi’s history made me stronger in a way. i needed to be there for her, especially when i could see that she was worried and scared. after dimi was discharged from the nicu she needed to go to the children’s hospital for follow up blood tests and scans till she was six years old. i would usually go with mum and dimi and remember how scared dimi would be. i was extremely protective of my little sister, and we were inseparable. as we got older, the bond we had continued. i am proud of dimi, and we have a good relationship, although she is two years younger, we are still very close. as i grew older my parents became involved in fundraising for the nicu and hospital. i was very grateful to be involved as it taught me to be appreciative and that raising awareness of the work of the nicu is important. other people get to see what my family went through and the important role nicus play. my mum fundraises a lot and she shares dimi’s story to give other families hope. i have been actively involved with fundraising. mum has encouraged us to give back to the hospital. as a family we have organised a successful gala dinner in 2016 and other fundraising events, and we also wrap and deliver gift packs for mother’s day, father’s day, christmas, nidcap day as well as take part as a family in the annual race for grace bike marathon. my parents attend the annual grace gala and my sister, and i have also attended two of them. i think my life has been entwined with the nicu, the doctors, nurses and therapists. bringing our story to life in 2023, i graduated from year 12 high school at all saint’s grammar in sydney. for my subject of visual arts, i had to complete the theory of various influential artists and a practical of a series of major works based on a theme. i created a series of oil paintings to portray the trauma faced by my family because of my sister's complicated birth. my family was informed in the nicu my sister had a 10% survival rate, leaving them in an extremely vulnerable and emotional state. these emotionally charged artworks serve as a testament to my family's challenging and unforgettable experience, with the aim to raise awareness of the severity of this situation. through this body of work, i sought to evoke a poignant blend of vulnerability and hope, capturing the transformative journey of my younger sister. the first canvas shows my sister just after surgery – this was her worst point. it draws out vulnerability and is confronting to capture the audience. my intention is to show people the power of faith. the second canvas shows people that from a bad situation things can get better – it portrays hope and faith. i wanted to raise awareness that without the nicu the situation would have been different. the third canvas shows me and my sister. she is getting better on the road to recovery. it is very special as it shows me and her connecting on the road home. while the genesis of my art is rooted in personal experience, various artists have influenced my creative practice. among them, alyssa monks (https://www.alyssamonks.com/) how being a nicu sibling influenced my life sophia gerassis column editor: debra paul, otr the presence of siblings in the newborn intensive care unit is encouraged and recommended by the standards for newborn care and parent organisations. sibling support programs in the nicu have a vital role in implementation of individualized family and infant developmental care. siblings are an important part of a family’s experiences and sophia’s story illustrates how the experience of having a sibling in the nicu can influence one’s life and impact career choices. doi:10.14434/do.v17i2.38129 sophia's high school graduation photo http://www.alyssamonks.com 14 • 2024 • developmental observer stands as a significant inspiration. her profound artworks capture the essence of vulnerability and intimacy in the human experience, navigating the disquieting spaces of emotional distress. drawing from the same medium, i have endeavoured to emulate alyssa monks' painting style, melding realism with a confrontational subject matter, thereby attempting to forge a powerful connection with the viewer. the paintings not only offer a glimpse into my family's perseverance through our personal journey but also serve as a catalyst for broader discussions about the challenges faced by families in similar situations. the power of storytelling through art i found when my art was on display people don’t say much – maybe they are in a state of shock. however, when they read the story, they seem to understand. the three pieces took me nine months to complete. while i was painting, it brought back feelings and emotions. it also brought back emotions for my mother which i found was very touching. it was hard to balance all my studies during my final year of school. i had to meet a deadline with my bodies of work which needed to be submitted for higher school certificate marking. i also needed to allow time to study for my upcoming exams. it was difficult but i am proud of myself for being able to complete and achieve great results. creating connections through art i would like people to see things from a sibling’s perspective and to be aware of the effect the experience and the trauma can have on a sibling. for me it resulted in a strong connection between me and my family to the nicu (grace), that’s why we fundraise and are passionate about making a difference in the lives of others. i want people to feel a connection to the artwork. they may not have had the same experience, but they can appreciate those who have. my message to other siblings of nicu babies is to have hope and be there for them. in the end, with lots of love, patience and with all the amazing medical help, everything will be okay. you must have strength. i also think it is important for siblings to be present in the nicu, so that the family is whole during that stressful time. i am now about to embark on my career. i started at macquarie university in february 2024 where i have enrolled in a double degree of speech & hearing sciences and psychology. this is a four-year course with an additional two years for a masters in speech therapy, a total of six years. my sister was seeing a speech therapist when she was younger, and i became interested in speech therapy. ultimately, i would love to work with children and help them overcome their speech issues. helping others makes me happy. i was also looking at courses that would not be taken over by artificial intelligence in the next few years, as well as courses in demand. i am hoping eventually to have my own practice. painting is a hobby, and i will keep doing it as i enjoy it and it helps me relax. i have attended art classes since i was six years old and now teach art to other children. i have also sold a few of my creations. my favourite works are my series of major works – called tiny miracles – named after mum’s organisation. it was very personal – links into my sister who was tiny and also our miracle! canvas 1 canvas 2 canvas 3 sophia painting 2024 • developmental observer • 15 words from my sister “seeing the paintings made me feel special and honoured that sophia did her major works on me and my difficult start to life. it made me feel different and the way it affected my family. my sister sophia is very special to me, more than just my sister, she is an inbuilt best friend. i want to keep doing things for the hospital and keep a connection as they saved my life and also save the lives of other babies every day.” words from my mother “it was emotional watching sophia paint. i am very proud and impressed with her work, even more so because of the strength and maturity she showed during the whole process. it has shown me that sophia felt strongly about the subject and her connection to dimi. as a two-year-old, sophia always sat quietly with dimi in the nicu. it was important for her to be there, so we were all a family together.” sophia's family contributing at fundraising event for the nicu nidcap federation international board of directors and staff 2024 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 16 • 2024 • developmental observer the state of qatar is in the middle east and occupies the northeastern coast of the arabian peninsula. the capital is doha. the population of qatar is nearly 3 million people, and the country is home to over 100 nationalities, of which around 15% are qatari citizens and the rest are expatriates. islam is the official religion of the state, but followers of different religions live in qatar. arabic is the official language of the country and english is a widely spoken second language. healthcare standards in qatar are generally high. over the last ten years, there has been substantial investment in maternal and child health. the leading public non-profit healthcare provider, established by the government, is hamad medical corporation (hmc), which offers family-centered maternity care. the hmc runs a network of hospitals, community clinics, ambulance services, and a home healthcare service. the hmc is accredited by the joint commission. it also has the primary health care center (phcc), which runs 27 regional centers across the country. there are a wide range of private healthcare options. approximately 70% of the population use the publicly funded system, which is available to all regardless of nationality. around 30% access healthcare through the private sector. there are five maternity hospitals with 32,000 newborn deliveries annually, 99.5% are hospital deliveries and 10% are premature births. the neonatal mortality is 4.28/1000 births. perinatal and maternal mortality rates in qatar are comparable to most high-income countries. the consanguinity rate is around 54%. there is one tertiary neonatal intensive care unit (nicu) offering cardiac and life-saving surgeries, two additional level 3 nicus, four level 2 neonatal units caring for babies less than 32 weeks, and six level 1 neonatal units (primary care). qatar’s developmental care practices and nicu initiatives focus on a holistic approach to patient well-being. they emphasize the integration of the cultural sensitivity of the region and respect the values and beliefs of families in qatar. parental awareness of the benefits of family-centered care and parental partnership in caregiving in a hospital setting is still evolving in the region. majority of staff have no formal training in developmental care provision, and developmental care practices are not standardized across the neonatal units. majority of units do not offer 24-hour access to nicu parents. the nicu the sidra medicine hospital is a women and children’s hospital and academic medical center. it employs more than 4,000 highly trained multidisciplinary clinical and support staff representing over 95 nationalities. the staff are drawn by an ambitious vision to care for women and children and to partner with parents in their child’s health care delivery. the nicu at sidra medicine, which opened in 2018, is the only tertiary nicu in qatar. it is staffed with a 35-member medical team. there are 150 nurses, dedicated nicu allied health professionals, pharmacists, and social workers, and training for doctors (fellows and residents). this is a referral hospital for high-risk pregnancies, infants who have life threatening illnesses, and/or rare congenital problems. care is extended to critically sick infants, those with complex illnesses, and preterm infants from the viability threshold of 23 weeks global perspective on developmental care in qatar bindu mary george, mbbs, frcpch, cct (united kingdom), pgcert (allergy) family integrated care, division of neonatology, sidra medicine, doha, qatar the family integrated care team and some of their activities doi:10.14434/do.v17i2.38130 2024 • developmental observer • 17 gestation. hence the nicu’s acuity is generally very high. about 40% of infants are born elsewhere and referred for conditions requiring specialist care. the nicu has 42 nicu cots spread over two floors in all single-family rooms conducive to delivering family-centered care. the average length of nicu stay is 29 days. there is a multinational-multicultural global staff community with varied developmental care knowledge and training. over the last five years, the staff knowledge gaps, staff-parent cultural-linguistic barriers, and the organizational challenges of a relatively new and diverse nicu were tracked. protocols have been established, introducing multiple quality initiatives, and delivering staff training in developmental care. working towards a standard of individualized developmental care there has been continued efforts to improve the outcome of newborns and to provide standardized individualized developmental care. in 2022, the former division chief, dr. charlotte tscherning, initiated family and infant neurodevelopmental education (fine 1) for all nicu staff. in 2023, a selected nine-member multidisciplinary team (mdt) of a neonatologist, neonatal nurse practitioner, physiotherapist, speech-language therapist, respiratory therapist, and four neonatal nurses were fine 2 certified. since 2023, a collaboration with newborn individualized developmental care and assessment program (nidcap) professionals abroad has promoted key concepts of nidcap. ongoing efforts continue for staff education, professional development opportunities, and attendance at international conferences for exposure to the latest evidence-based infant and family centered developmental care (ifcdc) practices. the parents and families in the nicu are multicultural and multinational with a wide range of socioeconomic and linguistic backgrounds. parental involvement in care is highly varied in this region due to family and job commitments. also, awareness and appreciation of ifcdc is still evolving, as most families are used to the traditional concept of the nursing-medical team being the caregivers. many families rely on private nurses and/or nannies to help with care of their infants. also, patient complexity and critical illness in a tertiary nicu often makes it is very difficult for parents to bond with their infant. parents are seen as their infants’ natural care givers. the focus is on enabling parents to be confident, knowledgeable, and independent caregivers. parents are welcomed around the clock and there is an inclusive rounding policy, and a 24hour interpreter service to tackle linguistic barriers. parents are encouraged to be involved in their infant’s care. they are supported to achieve parenting skills in routine caregiving and in recognizing their infant’s needs. parent-tailored education is delivered. the discharge process and parental education commences at admission. paramount importance is given to optimizing parental psycho-social support and well-being. the nicu is staffed with two dedicated social workers who meet every family within a few days of admission. palliative care and bereavement support is provided. onsite women’s mental health team expertise is available too. developmental care initiatives the core mdt of over 100 members (medical, nursing, allied health, health assistants, social workers, lactation consultants, administrative staff, parent support professionals), called ‘family integrated care’ (ficare), works together to promote and practice evidence-based ifcdc. it seeks to reduce the disparity between the intrauterine environment and the nicu and to optimize the potential for optimal outcomes for patients and families. the team created clear guidelines and introduced multiple quality initiative (qi) projects (figure 1). ‘managing infant neuro development’ (mind) is a qi focusing on bridging gaps in developmental care. it seeks to optimize positioning and nesting, increase the number of babies enjoying skin-toskin care, attend to focusing on environmental noise and light exposure minimization, minimizing pain and stress, promoting infant-driven, cue-based, positive safe feeding practices, increase the number of babies receiving breastmilk at discharge, work towards a baby-friendly hospital, and commence infants on mother’s own milk (mom) within 6 hours after birth (optimom qi). nidcap concepts are recently being implemented by the fine qi. they include components incorporating bedside behavioral observations into the care of babies, supporting regulatory behaviors, individualizing care, developmentally supportive handling, protecting baby’s figure 1: quality initiatives implemented at sidra medicine nicu for optimizing developmental care. 18 • 2024 • developmental observer sleep states, promoting cluster care individualized to each infant, swaddled weighing and bathing, creating awareness of the benefits of reading and talking to babies, and incorporating all these into routine care. a parent-peer support group called ‘sidra neonatal unit group support’ (snugs) was started. this group offers culturally sensitive support for parents of patients who share common experiences. it also serves as a platform for delivering parent education on ifcdc practices. parental feedback is regularly sought and is considered an important, valuable parameter for continuous improvement. the palliative care qi, ‘quality of life’ (qol), offers supportive care to families of patients in the final phase of a terminal illness as well as focusing on comfort and quality of life of infants with complex illness. the team identifies and meets with families to discuss palliative plans, to support decision-making incorporating traditions and customs into care, and to promote emotional well-being. an mdt called ‘family-centered discharge care” (fdc) developed a family-centered discharge process that starts from admission. it focuses on timely and safe discharge practices, and incorporates parent tailored education and preparedness for discharge. weekly mdt meetings were implemented to discuss progress and to highlight barriers to be addressed. a weekly list of babies for upcoming discharge, the ‘nicu graduate’ list, is generated to ensure timely completion of pre-discharge tasks. at discharge, every baby is congratulated and presented with a nicu graduate certificate. family-centered and developmental care resources, recognitions, and celebrations there are a range of family-centered bedside tools aimed at improving parent-staff communication and communicating progress to parents. these tools include: the what’s up patient care board, the train-to-home, and the care team card. recently, we introduced multidisciplinary bedside developmental rounds. these rounds focus on promotion of bedside family-centered tools, partnering with parents in bedside care, and bedside staff education. we have been observing breastfeeding awareness week, international kangaroo care awareness day, pain awareness week. we promote best practices in each of these areas. we also celebrate special nicu days, including mother’s day, father’s day, and 100th nicu days with parents-families. world prematurity day is well celebrated every november 17th. weekly protected educational sessions, staff study days, and orientation for new staff to address the challenge of high nursing staff turnover, is ongoing to ensure optimal quality of developmental care. assuring and evaluating developmental care quality by continuously monitoring practices and qis, the nicu data shows successful implementation of the qis. there has been gradual improvement in parental engagement and awareness of the benefits of parental caregiving. staff and parent feedback and anecdotes ascertain improved experiences and satisfaction with the qis. figure 2: a synopsis of the sidra nicu ifcdc quality initiatives over last 5 years. 2024 • developmental observer • 19 well-established post-discharge monitoring pathway and follow-up clinics for high-risk infants (hrif clinic) have been implemented. during these clinics, a multidisciplinary team assesses the neurodevelopmental progress of vulnerable newborns with standardized developmental assessment tools. additionally, every infant discharged from the nicu is reviewed at the nicu discharge clinic. this is reassuring for the parents and improves a safe discharge process. there is no community support post-discharge. nicu palliative clinic support is offered to parents of infants being discharged on ‘do not resuscitate’(dnr) plan and bereavement clinic support is available for families of deceased nicu patients. ongoing integration of ifcdc we continuously work to encourage parents to actively participate in their infant's care journey and to increase our professional expertise. areas for improvement are identified. challenges are continuously addressed. funding for educational activities, staff training and resources for optimization of developmental care is provided internally by the organization. these efforts are immensely supported by the divisional chief, professor samir gupta, and leadership. there is emphasis in the importance of investing in these practices for the long-term improved outcomes of infants. weekly protected educational sessions, staff study days, and orientation for new staff to address the challenge of high nursing staff turnover are ongoing to ensure optimal quality of developmental care. there is additional emphasis on research endeavors, the aim is to collaborate with the local neonatal network and with international institutions. there is a commitment to improve and grow in the provision of standardized ifcdc practices, to use any potential opportunities in this area, and to liaise with nidcap professionals to maximize nidcap-individualized, developmentally oriented care. acknowledgements: professor samir gupta, division chief of neonatology, sidra medicine, doha, qatar professor charlotte tscherning, former division chief of neonatology, sidra medicine, doha, qatar dr jauro kuna gaji, senior neonatologist, sidra medicine, doha, qatar nicu family integrated care team, sidra medicine, doha, qatar nicu fine 2 certified professionals, sidra medicine, doha, qatar diane ballweg, msn, developmental specialist at wakemed hospital in raleigh, north carolina, usarhyme & reflect buzz, bang, beep hey, i’m trying to sleep! this noise, as studies agree, makes me not as well as i could be. undisturbed sleep helps me grow from head to toe, you see. whiz, wonk, wham who do you think i am? healthy and big? not born too soon? not easily disturbed? eat beans with a spoon? alas, that’s not me, as you know, so help me sleep, develop, and grow. slam, splash, squall i am small, and that’s not all. i may be sick, with the ick. with bunches of blam, boom, jibber-jabby, i don’t sleep, and i feel crabby. plunk, pop, pitter-patters heidi taught us that everything matters. in the nicu i dwell, and i’m not so big or so well. i need sleep, light and deep, so please, not a peep while i sleep! thank you! a sleepy request in the nicu 20 • 2024 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e danish nidcap training and development center, aarhus the danish nidcap training and development center, aarhus, was established in 2015 as the first nidcap center in denmark. the center is located in the central region of denmark, hosted by child and adolescent medicine, aarhus university hospital in affiliation with the neonatal intensive care unit. our journey towards implementation of developmental supportive care, in our level 3 neonatal intensive care unit (nicu) at aarhus university hospital, started in 2005 with nidcap training by senior nidcap master trainer agneta kleberg followed by lectures and bedside education of staff by eva jørgensen. in 2006, hanne aagaard, and eva jørgensen were certified as nidcap professionals. in addition to continued implementation and education in our unit and in denmark, we founded a national nidcap network in 2006, together with nidcap professionals in denmark, to share experiences and to support each other implementing nidcap. in 2009, hanne aagaard received her ph.d. degree from aarhus university with the title: preterm mothers experiences, self-esteem and support. in the establishment of the training center in aarhus, we were supported by senior nidcap master trainer agneta kleberg and apib master trainer deborah buehler and in 2015, eva jørgensen was certified as a nidcap trainer. hanne is now professor in neonatal nursing at lovisenberg diaconale university college, norway. in our nidcap training center, the primary objective is to encourage the implementation of developmental supportive care for the growth and well-being of newborn infants and their families. our vision is to support and empower families, and support the multidisciplinary team overall in achieving this goal. our approach involves initiating newborn individualized developmental care and assessment program (nidcap) education and family infant neurodevelopment education (fine) within our own nicu, the pediatric units caring for newborns without the need for intensive care, the maternity unit, and the labour ward (midwives). we disseminate this educational outreach to local hospitals by theory and protocols for handling both elective procedures and urgent interventions in newborn care. on a global scale, eva jørgensen, our center’s nidcap tenna gladbo salmonsen, rn, mscn, nidcap professional, co-director, and eva jørgensen, rn, nidcap trainer. map of denmark showing the central region highlighted in rust color. doi:10.14434/dov17i2.38131 2024 • developmental observer • 21 trainer, contributes to the development of standard of care plans for the european foundation for the care of newborn infants (efcni). we offer fine level 1 training to all newly hired nurses as a part of the introduction program, and they are in the following months supported by structured nidcap bedside guidance with an increased focus on the autonomic system, feeding and attention to the infant’s behavior. this is a part of the overall implementation strategy. our goal is for all nurses and doctors to complete fine level 2 training, we are on our way – although it will be an ongoing process. fine 2 is important to support the overall level of developmentally supportive care. it gives a broader understanding of al’s synactive model of infant development and a more consistent language among health-professionals across all levels of experience. furthermore, and very importantly, it strengthens the communication with parents. a fine 2 certified nurse says: “the experience of a professional quality improvement and thus a significant professional satisfaction has contributed to a great personal fulfillment." further she says, "the fine 2 educational program has also contributed to enhancing the dialogue with parents." a doctor says. "observing the infant and families from the bedside during medical procedures, feels like having just been given eyes and ears for the first time in our own unit! what you see cannot be unseen." our team is growing. the team at the danish nidcap training and development center, aarhus and our nicu at aarhus university hospital has great support from our multidisciplinary leadership. we are currently four nidcap professionals and further three are in training. we are proud of having a family-representative, who also has had a strong connection to the national parent organization, as a member of the steering group for the nidcap training center. it expanded our perspectives, when talking about collaboration with parents. collaboration in close collaboration with the newly established danish nidcap training and development center, copenhagen, we have developed a non-pharmacological standard operational procedure for a study. the key focus is a structured observation of the infant’s comfort and provision of supportive care before, during and after a procedure. we aim to implement the protocol for any medical procedure in the nicu and all clinical research, that involves manipulation or interventions at the patient level. a dedicated nurse is responsible for environmental preparation, supportive positioning, observation of the infant's communication signs, and pacing the task accordingly to ensure minimal challenge, discomfort, and a pain-free procedure for the infant. collaborating with parents, the nurse prepares the infant through environmental modifications such as adjusting light and noise, maintaining warmth, and providing supportive bedding. continuous communication between the nurse and other team members provides an environment to support the infant during the procedure. more research to come. while increasing the critical number of nidcap and fine certified staff, we have also fertilized the ground for creating new knowledge. we plan to compare the need for pharmacological intervention on the comfort of the infant and parents during and after predefined procedures using the standard operating comfort procedure described previously, with no standardization procedure. patient-centered learning the support of the infant starts with understanding how we as nidcap professionals, can provide an environment and comfort for the baby. in addition, to empower families to become involved in their infant’s daily care and feeding, and to support part of the aahus nidcap team 22 • 2024 • developmental observer them during medical examinations and procedures. nidcap professionals work clinically at the cot side with parents and other health professionals, showing them their observations, reflections and supporting them to see clearly the behaviors of the baby. this enables the family and healthcare professionals to gain knowledge and skills and apply this to the care of the infant. bedside observations provide insights into the infant’s response and needs. this hands-on learning approach is crucial for developing a thorough understanding of developmental supportive care in our unit. it improves communication skills, decision making in care, and collaboration with parents, and promotes multidisciplinary teamwork in support of the infant’s development. this statement by a nurse supports our work. "through increased awareness and understanding of the nidcap approach, i have been able to optimize and structure the environment, enabling me to effectively support each child with individually tailored care and nurturing. the enhanced skills have resulted in an experience of being able to fulfill my core responsibilities in a much more qualified manner." the team at danish nidcap training and development center, aarhus: nidcap trainer: eva jørgensen, rn training center director: tine brink henriksen, md, professor, consultant chair, phd training center co-director: tenna gladbo salmonsen, rn, mscn, nidcap professional. contact: eva jørgensen; nidcaptrainer@gmail.com tenna gladbo; tennsalm@rm.dk danish nidcap training and development center, copenhagen the neonatal intensive care unit (nicu) in copenhagen was the first nicu in denmark. it is also the largest nicu and the only level 4 unit in the country. our nidcap journey in copenhagen began in late 1990 when nurse specialist janne weis and nurse dorthe mai were introduced to nidcap. before then we had a developmental and family centered care group of dedicated staff who worked with family focused care, minimal touch, and early discharge. dorthe mai was a leader in implementing hospital-assisted home care after early discharge in denmark. the first family in denmark to use early discharge was in 1997 provided by dorthe mai and the home care team from our unit. in the year 2000, janne weis and dorte mai became nidcap professionals with agneta kleberg as their nidcap trainer and mentor. a new friendship and lifelong partnership were established with agneta kleberg. her dedication and contribution as a person and as a professional have had a very positive and important impact of the strategy, vision, and goals for our nicu and nidcap journey. in 2005, we went from an open bay unit to two family rooms with one parent bed next to the infant. it was a significant step towards more family centered care and strengthened the partnership between the healthcare professionals and the family. this move facilitated the families to be actively involved in the care for their infants, enabled shared decision-making and more individualized care plans for the infant and the family. over the years the nidcap team expanded janny hoegh and jannie haaber, two nurses who became nidcap professionals. janne weis completed her ph.d on family focused and guided conversations using a semi structured conversation form with a focus on partnership. this represented a huge milestone in the unit’s journey towards enhancing family centered care in practice. nidcap certificated unit becoming a nidcap certified unit in 2015 was undoubtedly a significant achievement and a testament to the unit’s commitment to provide high-quality individualized developmental care for infants and families. the accomplishment was a culmination of years of dedication, hard work and support and engagement from the leadership. without leadership support it wouldn’t have been possible. the nidcap nursery program with its 121 points is a comprehensive evaluation framework that provided a structured approach for identifying areas of improvement and setting of new goals for enhancing care for infants and families. it enabled us to recognize the units existing strengths. celebration of our achievements, both big and small, is very important for boosting the morale, enhancing teamwork, and maintaining motivation for providing high quality care. we continue to celebrate in our daily work. in 2020, the unit was re-certified in the nidcap nursery program. re-certification is a lifelong commitment and an ongoing evaluation and reflection of how we take care of infants, families, and each other. now and in the future. the nidcap jannie haaber rn, intensive care nurse, nidcap trainer and director of the nidcap training center and porntiva poorisrisak phd, consultant neonatologist, apib professional, co-director of the nidcap training center doi:10.14434/dov17i2.38132 2024 • developmental observer • 23 nursery program and guidelines will be used in preparation for our new childrens hospital mary elizabeth hospitalfor children, teens, and expecting families for children. since 2015, the unit has had an interdisciplinary nidcap group, consisting of a team of experienced healthcare professionals all working to support development care in a family centered way. the group is leaded by jannie haaber (rn, nidcap trainer) and porntiva poorisrisak (neonatologist, apib professional). since 2020, the nidcap team has had a parent consultant, who first of all is mother of a preterm infant and also works in her professional life as a family advisor for families with preterm infants. our parent consultant is member of the advisory board in the danish organization for preterm infants and their families. inclusion of a parent consultant in the nidcap group together with a parent consultant in the leader group of the unit, reflects a commitment to prioritizing the family’s needs and experiences. hopefully contributing to more responsive and compassionate care for infants and their families during their stay in the unit. becoming a nidcap training center nidcap nursery certification was the first milestone reached in preparation to become a nidcap training center. the designation as a nidcap training center signifies a recognition of the unit’s commitment to be role model for other healthcare professionals and a responsibility to share knowledge and expertise both within and beyond our own nicu. by offering education and training our unit now has the possibility and responsibility to empower healthcare professionals to integrate nidcap into their own practiceto improve wellbeing, development and outcomes for infants and families. leadership support and involvement is crucial for a successful implementation of becoming a nidcap training center. and luckily there has been a huge support from the leaders of the unit and the hospital. support to ensure resources, to address barriers proactively and to inspire and motivate staff being a part of the journey and pride of the achievement as a team. in 2019, jannie haaber started as a nidcap trainer in training and porntiva poorisrisak became a apib professional in training at the same time as suggested and supported by agneta kleberg. the decision to have jannie and porntiva work together on apib training was a strategic move, groundwork for their future leadership roles within the nidcap center. of course, again with great support from head of department morten breindahl and head nurse of department sanne allermann beck who are the medical and nursing directors in the nidcap center, jannie haaber is director and porntiva poorisriak is co-director of the center. during the process of becoming a nidcap trainer and apib professionals jannie and porntiva had a very close collaboration with nikk conneman, nidcap and apib master trainer and pernilla stenman (nidcap trainer in training at that time) from lund in sweden. having supportive partners throughout the journey has undoubtedly enhanced the experience, made possibilities for feedback, reflection and provided encouragement to keep on. a partner in crime is very important throughout the journey to become a nidcap trainer and to establish a nidcap center. sharing, caring and exchange. in august 2023, we reached the milestone to become a nidcap training center where jannie finished as nidcap trainer and we could celebrate having two more nidcap professionals in the unitlaerke johanne bager and maria clemenn kaas, two intensive care nurses. the center was officially opened on 26 january 2024, the same day celebrated with a conference day. all nicus in denmark and collaborative pediatric units at the hospitals were invited. there were 130 healthcare professionals from all over the country and the nidcap team from lund/malmo attended. with fantastic speeches from agneta kleberg, nikk conneman, stina klemming and deborah buehler the participants were enriched with an understanding of nidcap, architecture of brain, brain protection, the importance of keeping family together and support skin to skin contact from the very beginning. agneta received a welldeserved standing ovation for her tremendous work, her expertise, passion, and impact on countless infants, families, and professionals she has trained. at the end of the day the ribbon was cut and the danish center nidcap training and development center, nidcap team 24 • 2024 • developmental observer copenhagen was officially opened. afterwards we celebrated with music, champagne, and cake. collaboration for several years there has been a danish nidcap center in aarhus with eva joergensen as nidcap trainer and tenna samuelsen and tine brink as directors. having a national nidcap center nearby should not be undervalued and makes opportunities for support, shared learning and collaboration in joint projects and initiatives that can have significant impact locally and nationally. already we have worked together describing non-pharmalogical approach for lisa (less invasive surfactant administration) procedure as part of a phd project. we are looking forward to more future interventions or project together. education, projects, and research as mentioned, being a nidcap certified unit and a center we are committed to being role models. in the beginning of april, the nurse leadership were the first group in the unit to complete family infants neurodevelopmental education (fine 1). fine 1 will be an obligatory part of the nurse’s development and training program in the unit. in spring 2024, the interdisciplinary leadership, jannie and porntiva will make plans for fine and nidcap education in the unit. we are looking very much forward to collaborating with other units and hospitals in the future. qualitive improvements and research is a high priority in the unit: during the last year we have established group sessions for mothers, fathers and families which are provided once a week. all group sessions are supported by members of the nidcap group. there has been fantastic feedback from parents and families. a new protocol for golden hour, day and week has been made for extreme premature infants and a new protocol for skin-to-skin contacts for the youngest born before ga 25 weeks. we also are in the beginning of working structurally on how to keep families together with cpap treatment at the delivery room to prevent hospitalization. we begin with the latest preterm and full-term infants. nidcap member ragnhild maastrup, rn, phd and ibclc specialist has a leading role in our neonatal interdisciplinary research. ragnhild has undertaken and still does research about preterm infants and breastfeeding. in the nidcap group we have at the moment three nurse phd students. rikke steenkjaer has focused on pediatric delirium. she and the team are researching non-pharmacologic interventions in line with nidcap principles to prevent and manage pediatric delirium in critically ill children aged 0-17 years. international picu experts agreed on a bundle of interventions such as developing daily structure, adjusting light exposure according to the time of day, scheduling time for sleep, providing eyeglasses and hearing aids if appropriate, and family involvement. joan neergaard larsen and team are researching couplet care, keeping families together. the project aims to prepare for a couplet care intervention in 2026, when all neonatal, paediatric, and obstetric departments at our hospital will relocate to the new mary elizabeth’s hospital. the new hospital will have single-family rooms with the ambition of keeping families together. mette petersen has just recently been admitted as phd student. this phd project is a national intervention study aiming to support first-time fathers (ftfs) of preterm infants in early parenthood. the title of the phd project is development and process evaluation of a family healthcare intervention supporting first-time fathers of premature infants admitted to a neonatal unit and their transition to everyday life at home. all above mentioned are just a few of initiatives we have been or are working on. our future goals will continuously be to provide the best possible care and treatment for infants and familiesthanks to nidcap and the network, all the dedicated staff in our unit, trainers, inspiring people, and research. contact: jannie haaber – nidcap.rigshospitalet@region.dk becoming a nidcap training center 2024 • developmental observer • 25 the 35th annual nidcap trainers meeting nidcap: systems integration at local, regional and national levels november 5-7, 2024 centre de congrès pierre baudis 11 esplanade compans caffarelli toulouse, france hosted by the french nidcap center, toulouse (by invitation only) 26 • 2024 • developmental observer n i d c a p o n t h e w e b nidcap blog nidcap.org nidcap training centers – facebook pages the nidcap training centers have been active promoting their work on facebook. kangaroo day and world nidcap day were celebrated. we also have three new nidcap professionals and an outreach program for developmental care. https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/profile.php?id=100069429309444 https://www.facebook.com/nidcapaustralia https://www.facebook.com/nidcap 2024 • developmental observer • 27 n i d c a p o n t h e w e b nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ https://www.facebook.com/nidcap.sweden https://www.facebook.com/groups/3103556629927874 https://www.facebook.com/profile.php?id=100069769423304 https://www.facebook.com/profile.php?id=100063585520167 28 • 2024 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-director: bonni moyer, mspt contact: annette villaverde email: annette.villaverde@ commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc and jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: nidcapchicago@gmail.com national nidcap training center boston children’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard. edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: nadine griffiths, mn and hannah dalrymple, mbbs contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@ health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattingerjürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierrebru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@ uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: tenna gladbo salmonsen, rn, mscn contact: eva jørgensen, rn email: nidcaptrainer@gmail.com danish nidcap training and development center, copenhagen copenhagen university hospital, rigshospitalet copenhagen, denmark director: jannie haaber, rn co-director: porntiva poorisrisak, md, phd contact: jannie haaber, rn, nidcap trainer email: nidcap.rigshospitalet@ regionh.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: jacques sizun, md co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr saint-brieuc nidcap training center saint-brieuc – paimpol – tréguier hospital center saint-brieuc, france director: marie-cécile androgarcon, md contact: aurélie guillou, rn email: aurelie.guillou@armorsante. bzh nidcap training centre hospitalier de valenciennes valenciennes, france director: sabine rethore, md co-director: juliette barois, md contact: peggy laurant, rn email: p.laurant@orehane.fr 2024 • developmental observer • 29 n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med. uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: alberto berardi, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail. com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@ gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid. org sant joan de déu barcelona nidcap training center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: agnes linnér, md, phd co-director: siri lilliesköld, rn, ms contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: beverley hicks, ot email: beverleyann.hicks@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: daliasil1960@gmail.com asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 2025 • developmental observer • 33 n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e valenciennes nidcap training center, france tant de chemin parcouru! juliette guilliot, pédiatre en chef et peggy laurant, infirmière pédiatrique et formatrice nidcap c'est dans la ville de valenciennes, dans le nord de la france que tout commence. après la construction d’un nouveau complexe hospitalier qui s’est achevé avant la seconde guerre mondiale, c’est en 1960 que la nouvelle maternité fut bâtie. en hommage à la principauté de monaco, marraine de la ville de valenciennes durant la première guerre mondiale, elle fut inaugurée en 1980 par la mère du prince rainier iii et devint alors la maternité "monaco". le service de néonatologie était éloigné de la maternité, les salles de soin étaient de grands espaces ouverts entourés de baies vitrées, ne disposant que de peu de place pour les parents. le docteur catherine zaoui qui dirigeait alors l’unité était curieuse de découvrir d’autres pratiques et philosophie de soins. un voyage à brest était alors organisé, à la rencontre des dr nathalie ratynski et jacques sizun, pionniers de l’implantation du nidcap en france. le début d’un grand changement s’annonçait mais il a fallu faire avec les moyens que nous disposions c’est-à-dire cette architecture ! avec beaucoup de bruit, de lumière…la motivation était bien présente et progressivement quelques techniques de soins de développement sont mises en place, menées par une équipe dynamique et bienveillante. c’est en février 2005 que le service de néonatologie déménage dans de magnifiques locaux conçus dans l’objectif d’implantation des soins de développement et du nidcap avec des équipements adaptés comme un monitorage central, des chambres parents-enfants, des salons d’accueil, une tisanerie et une chambre pour des parents habitant loin. la formation de l’équipe soignante alors très investie dans le projet commence par la certification de 2 pédiatres et de 2 infirmières puéricultrices, formées par le docteur nathalie ratynski du centre de formation de brest. l’aménagement du service est repensé dans cette philosophie, des formations sur l’allaitement maternel sont déployées et divers groupes de travail se mettent en place (promotion de l ’allaitement maternel; accompagnement des parents vers la sortie ; lutte contre les nuisances sonores ; promotion des interactions précoces, du peau à peau, la musique, la lecture ; la prise en charge de la douleur…) ainsi que la mise en place d’un comité de pilotage en collaboration avec les parents. les formations nidcap se poursuivent durant plusieurs années avec au total 8 infirmières et 5 pédiatres formés. doi : 10.14434/do.v18i1.40913 hôpital néonatal de monaco 34 • 2025 • developmental observer dans la continuité du projet d’implantation du nidcap dans le service, un poste de référent est créé en 2011. le nombre d’observations augmente considérablement. deux années plus tard, l’équipe s’engage dans la démarche de certification nidcap. un seul service est alors certifié en france, le service de néonatologie du chu de brest. la certification est finalement obtenue par le service en 2016, récompensant alors le dynamisme et le travail de toute l’équipe. le travail sur l’allaitement maternel porte ses fruits et le service de maternité et de néonatalogie obtient la labellisation ihab en 2011 et est depuis régulièrement recertifié en 2015, 2019 et 2024. le service dispose de 2 postes de consultantes en lactation en journée en semaine (1 en maternité, 1 en néonatalogie), d’un poste de « référente nidcap » en journée en semaine en néonatalogie (avec renfort occasionnel d’autres ipde certifiées ou pédiatres certifiées) et d’un poste de « référente de soins » en journée en semaine. peu de temps après la certification nidcap, une antenne locale de l’association nationale « sos préma » est créée dans le service. mme wallet, maman bénévole de l’association, intervient régulièrement dans le service et organise des animations pour les familles. durant toutes ces années, l’aménagement du service est toujours repensé. l’espace cuisine des parents est entièrement rénové, des lits doubles pour les parents sont installés dans trois chambres parentales dans l’unité de néonatologie. la cuisine du personnel et l’accueil du service sont également redécorés grâce à la participation de l’association des « bricos du cœur ». en 2020, sous l’impulsion du projet national des « 1000 premiers jours », un projet est élaboré par le réseau régional de périnatalité orehane avec le soutien financier de l’agence régionale de santé des hauts de france. l’objectif était alors d’aider à l’implantation des soins de développement dans les unités néonatales en proposant des formations accessibles à tous. il s’agit alors d’une première expérimentation d’une telle ampleur en france. la formation de formateur nidcap de peggy laurant, infirmière puéricultrice de valenciennes débute, grâce sa mise à disposition par le centre hospitalier de valenciennes à hauteur de 50 % de son temps de travail. cette formation commence en 2021, assurée par la formatrice delphine druart du chu saint pierre de bruxelles sous la guidance de agneta kleberg et de déborah buehler pour l’apib. un long et ambitieux processus de formation débute alors et se déploie dans la région avec de nombreuses sessions d’initiation aux soins de développement menées par peggy laurant permettant la formation de 568 personnes de juin 2021 à octobre 2024 (sessions également animées par stéphanie giers professionnelle certifiée nidcap du centre hospitalier de roubaix en 2024). dans le cadre de sa formation de formatrice nidcap, deux infirmières de néonatologie de valenciennes sont certifiées par peggy. dans un second temps, les formations fine 2 débutent en immersion à valenciennes en 2023, avant de s’étendre à toute la région avec un total 8 professionnels formés en 2024 et 12 en cours de formation. (cf carte régionale). début 2024, la formation de formatrice nidcap de peggy laurant et la formation apib sont validées, le centre de formation nidcap de valenciennes est alors créé, dirigé par le docteur réthoré sabine (pédiatre certifiée nidcap) et co-dirigé par le docteur guilliot juliette (pédiatre cheffe de service certifiée nidcap) et peggy laurant comme formatrice nidcap. l’ouverture du centre de formation est le résultat d’un long processus, d’une longue relation de confiance entre les directions et les chefs de pôle… mais aussi le début d’une nouvelle histoire pour le service de néonatologie de valenciennes. a suivre… une salle commune à la maternité l'équipe nidcap de valenciennes 2024 • developmental observer • 7 becoming an advocate for newborn care in hungary w hen did my ’patient expert’ journey begin? probably during my nursing education in the early 1990s, i was fortunate enough to try myself out in intensive care with all of the beauties and challenges within. but 10 years later i became a ’naive patient’. i never thought there could be such a deep, gut-wrenching, paralysing pain in every part of my body. i thought, this can't happen to me, i can’t give birth early, way too early. many women have thought that and sadly, many will continue to think that until the unthinkable happens. i remember standing in the hallway of the deserted maternity clinic in the evening. the smell of chemicals, a distant baby crying, snippets of conversations, a typical obstetric setting. in my hand i clutched the day's breastmilk. as i stood outside the neonatal intensive care unit (nicu) door i tried to recall how i got there. i was a hungarian mom and lived happily in the frenchswiss border, close to geneva with my french husband and 7-year-old little girl. i was pregnant with our second child. a 31-year-old mother, who did not smoke, nor drink, with a previous healthy pregnancy and a natural, uncomplicated pregnancy and birth. during the 25th week of my pregnancy, my gynaecologist authorized one last flight: he let me go for a two week vacation to take my daughter to visit our family in hungary. two days before our return to france i became unwell. first, i had a headache, then my legs and arms got heavy and swollen, all of a sudden, i was feeling extremely tired and i dragged myself into the closest hospital. i had pre-eclampsia. memories that triggered action i remember the emergency doctor who explained to my frightened husband, who was then 1300 km away from us, on the phone, what was happening to his wife and his unborn son. they would have to deliver the baby immediately. my son was born in the 27th week of pregnancy and weighed 890 grams at birth. i remember the moment when my son was born. i saw his tiny feet as a neonatologist was running away with him as he had no signs of life. my husband rushed to us from france. i will always remember the first time we met our son around 24 hours after his birth. i tried to prepare myself for the sight of my son, but you cannot prepare for this. five days after his birth, the hospital released me and i had to leave my baby there. alone. i was devastated. the nicu door will haunt me for the rest of my life. i was afraid of what was waiting for me behind that door. for the next 14 weeks, i stood in front of that door twice a day and pressed the bell. would they open quickly, or would i need to wait? if i had to wait, was it because something was going wrong on the other side of the door? was it my son? the doctors came by and often said some cliché like ‘two steps forward, one step back’ and then they left me alone. the visiting time for each infant was 20 minutes, twice a day. i insisted on calling the nicu every morning at the same time, i had my daily rituals. every day i wrote down every little detail in his baby journal, and also added one photo for every day. if anything happened, i knew i needed memories. i needed to prove his existence. often, i found myself not looking at my baby but at the monitors. i tried to think that this is not my son, to avoid getting too attached to him. i did not want to feel any pain, if he would not make it and he died. although everybody tried to convince me that i had to be happy as i had survived, i blamed myself for his preterm birth. i was a mother of two children, but what was the reality? one of them was 1300km away from me and the other one was locked down in a nicu, where i had to ask permission to see him. i couldn’t be a mother to any of my children, it was torture. i felt invisible in the hospital. the doctors and nurses were overworked and did not have time to support a mother who was depressed. i had no psychological help. each nurse cared for between six and seven infants in incubators, and there were one-two neonatologists each shift. lívia bonnard nagy, co-founder, vice-president right(s) beside you association (melletted a helyem egyesület), eupati (european patients' academy on therapeutic innovation) fellow doi:10.14434/do.v17i2.38135 undertaking an observation during fine 2 8 • 2024 • developmental observer at that time, i was confident and felt that my baby was in good hands. never, not for one minute did i question that my son and i did not receive the best treatment and care. now, in hindsight, i know how dangerous this situation was. i remember the exact day and the exact hour when my son started to breathe without any machine. at that moment he was born a second time, but i was not there. they told me on the phone. the moment when i could hold him in my arms for the first time is equally unforgettable. he was then 12 weeks old. there must be a better way eighteen years ago he went through traditional, and unfortunately outdated, non evidence-based neonatal care. i had two visits for 20 minutes each a day to be with my baby, who was i was told was ’ready’ to be visited. i could only look at him, i had to ask permission even to touch him or take a picture of him. the main reason was: as they say: to avoid infection. i imagined i had a biological bomb, planted in my head from the first moment i set foot at the nicu and it went on for 14 weeks. i was afraid to kiss my own child for a year. i did not let anyone to touch him beside his father and sister for a year! they were giving formula milk to my baby as my breastmilk dried up very quickly because of my stress, and misleading information. he received good old cluster care where his sleep cycles, pain and stress were ignored, he was positioned on his back without any support for his shoulders, legs or knees while he was in the incubator. then one morning, the staff told me i could take my son home. all of a sudden, he was lying there next to me in the bed, a little two-kilogram baby, who was on monitors only few hours before. i felt completely incompetent and did not dare to sleep for weeks. i was his monitor during the night: is he still breathing? how on earth could the nicu staff think i could possibly take care of this baby? is it really my baby because i still don’t feel it. and i knew about attachment and bonding as i already have an eight year old daughter. after my son got out of the nicu, i felt many things, but i missed the most important feeling: i did not feel like his mother. i felt more like a nurse and did not let anyone near him. when i fed him, i was wearing the green nicu uniform and a mask for weeks. we didn’t receive any diagnosis, only ‘this child got away with it’. no diagnosis means no prognosis it means go home and have a happy life. it took another two and a half months before we both could take a flight to go home, back to france. we learned that the french and swiss social system are extremely weak and do not have enough information or a good adviser so it is easy to slip out of the social system. during follow-up nobody took my worries, my comments seriously. my son’s development was extremely slow. we were followed in three different countries, but there was no consistency. becoming an advocate it took me two and a half years to learn how to become the voice of my child, to stand up for his rights and stand up for my rights as a mother. they kept repeating, he is an extremely preterm boy, why am i so impatient? after two and a half years we finally got a diagnosis. my son has periventricular leukomalacia (pvl) and cerebral palsy (cp), which equals a mentally and physically disabled child. therapies came in line, some were useless, some dramatically improved my son’s development day by day and changed the quality of his and my family`s life. some were recommended by the neurologist, some by the pediatrician. i received ideas from the parent group, from the internet, and google doctor became my best friend. at the beginning i did not question the scientific evidence of any of the interventions, most of them largely expensive and not paid or reimbursed by health insurance. results were coming little by little. my son started to walk and talk around the age of five, he became relatively independent and managed his daily routines. feeding was always an issue, and still is. if he finished his food, i doubled the portion. the first 10 years of his life this was my ‘mothermeter’. he started school in a special class and continued his studies in a special school adapted to his handicap. so, i had to give up my job, i became a full time social assistant to navigate between medical appointments, therapies, interventions, school, finance and insurance. what does it take to become a dedicated advocate and create the right(s) beside you association for premature babies in hungary? it took a traumatic birth and nicu experience with an extreme premature baby who weighed barely 600 grams in the first week and who, has to live with the consequences of his early arrival for the rest of his life. it took a minimum of one neonatologist (special admiration to dr. csaba nádor) who believed that with good patient-centered and family integrated care you can protect the brain and neurodevelopment of these babies. there needs at least one nicu nurse who believes that by involving parents, even better care can be provided and the baby will leave for home with after discharge 2024 • developmental observer • 9 competent parents. our association was founded in september 2015 with the aim of bringing together in a unique way doctors, health professionals, decision makers and ngos representing parents of premature babies to ensure that every baby born prematurely or sick has the best possible chance of survival with the best possible quality of life. to give everything i didn’t have 18 years ago, up-to-date, evidence-based information about premature birth-related diseases, professional help and social support. call to action as developmental care was not part of the nursing curriculum, the association strongly advocated to establish the fine (family and infant neurodevelopmental education) training as a basic education in every level iii nicu in hungary. with the help of volunteer neonatologists, ‘veteran parents’ whose child was born extremely preterm, we fully translated the educational materials and organised the trainings. these parents have been helping the international trainers, initially as translators, and now themselves involved in training part of the faculty. along the way we learned how to get finance for the training and we started to collaborate with industry partners. we have learned how to climb back through the window of the decision-makers when we are thrown out the door. there was a need for an evidence-based handbook specially for nicu nurses. we translated the neonatal nursing care handbook by carol kenner and judy wright lott. we started to advocate for the nicu nurses as we faced huge challenges, how to implement neurodevelopmental care on a daily basis. closed-system workplaces are typically teams that deal with life-and-death situations. their work, and the success of their work, depends on everyone knowing exactly what to do, and in what order they are maximally interdependent. we had to be aware of their mental health state and the workload they faced day by day. during these 18 years i have heard lots of stories from families like mine – throughout europe and around the world. we are not a special unique case. during these years i learned a lot about the neonatal practices at both domestic and international levels. finally, i dare to say out loud: my son did not get the best practice in hungary. france and switzerland failed during follow-up. was my son the unfortunate little boy who was born in the wrong country, in a wrong city or in a wrong nicu? was it my fault i couldn’t become a competent mother for my son, to stand up for his right and advocate for him correctly? today we know, i know that ‘every care is brain care’, every touch and word has lifelong consequences and we have to protect the brain of every preterm baby, but i wish i knew back then…. 18 years later mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 16 • 2025 • developmental observer m y perception of training within the nidcap model framework is that of a gradual and increasing approximation to the needs of the infant and their family, as well as a deeper understanding of the professional team's impact on their care. this idiosyncrasy gradual and increasing is essential in a training process aiming to understand and care for the infant's individuality. nidcap training consists of several phases.1 once the professional in training (hereafter, "trainee") has demonstrated an appropriate conceptualization of the infant's behaviour and can formulate appropriate observations and care recommendations, the next phase in training is the advanced practicum (hereafter, "ap"). the ap consists of periodic observations, following the learned methodology, of the infant and family, from admission to the neonatal intensive care unit (nicu) until hospital discharge and transition home.2 the ap is an important turning point in the training process and a unique component. both trainees and trainers come to the ap with a good deal of excitement and expectation, and perhaps holding various questions in mind: will we be able to create a genuine relationship of support and collaboration with the family? how will it evolve? what will be its nuances as the weeks go by? how will we express, both in writing and through actions and deeds, our commitment to the care of the infant and family, and to the training process itself? will we be able to build and ensure the supportive envelope needed for the baby, the parents, the trainee, and the nicu professionals that the nidcap model3 advocates for? these questions invite us to reflect on those less apparent or explicit opportunities, yet to be revealed, that this phase of training offers to both trainees and trainers. if we come with curiosity, with open minds and hearts, what "hidden treasures" can we discover in our experience with ap? in this article, i would like to discuss some of those i have discovered in my own training experiences. a call for individuality the ap spans several weeks. it begins in the first days after birth, continues through hospitalization and discharge, and ends in the home environment. throughout this time, longitudinal and regular follow-up of the infant through nidcap observations provides us with a better understanding of their needs; it engages us in a new way in promoting their ongoing evolution and development. the ap tests our ability to adopt, develop, and maintain an individualized approach to care over time. this stage of training calls upon us to further adjust and refine that capacity, which we have been developing in earlier stages of nidcap training. it prompts us to refine our analysis further and to articulate our recommendations for this unique infant we are following. it places us in the need to tailor those recommendations to the infant's strengths and vulnerabilities, their clinical evolution, their family, and their circumstances. the core competence to be developed in nidcap training is the ability to ensure the individualization of care.1 because of this, during ap, our ability to maintain the perspective of change and evolution advocated by the synactive theory of development3 becomes essential and more evident. it is important to remember that the nidcap model stems from this theory. since it is a fundamental pillar of the model we are studying, the trainee must have begun to develop this competence in the early stages of their training, prior to the ap. however, the trainee's ability to individualize care recommendations becomes more visible during the ap. consequently, the requirement to individualize care emerges even more strongly at this stage of training. a situation to exemplify this is the care recommendation "maintain close physical contact with mother". this recommendation is appropriate for every stage of the infant's life. it has been relevant and crucial from the very moment of birth, and constitutes a need that is present, without exception, at every phase of the infant's hospitalization.4 however, the way of addressing and updating it for the infant and family differs at the advanced practicum in nidcap training: hidden treasures for trainees and trainers dalia silberstein, phd, rn doi: 10.14434/do.v18i2.41643nidcap trainer, israel nidcap training center finding new ways to build a dialogue 2025 • developmental observer • 17 each developmental stage. we must anticipate that our approach to this core developmental need will change and evolve in each of the observations that make up the ap. it is therefore very important that in these nidcap observations, which the trainee formulates and the trainer evaluates, we can identify and highlight the unique evolution of each infant and family. thus, following the previous example, if it was a physiologically unstable and medically labile two-day old infant, the previously proposed "universal" recommendation above might take the singular form of: "consider guiding j's parents on how to help her maintain a relaxed position by gently placing their hands around her, so that j's feet and arms are slightly bent and close to her body." in future observations we need to clearly formulate (the trainee) and identify (the trainer) how that unquestionable, constant and immovable need "to maintain close physical contact with his mother" takes on different nuances. such nuances are the unmistakable manifestation of individualization. therefore, they should become apparent in the ap as individualized care recommendations that vary according to changes in the infant's circumstances, e.g., their clinical situation; their ability to be alert or organize their posture; the parents' competence, etc. in short, as i have tried to articulate, the ap confronts both trainees and trainers with the challenge of individualization. it is at this stage of the training process that we can most clearly demonstrate our ability to perceive care in an individualized way. this is the first of the ap's hidden treasures: the unparalleled opportunity that this learning path offers to the trainee and the trainer. it allows trainees to demonstrate their competence in individualizing their assessments and suggestions. in turn, it allows the trainer to identify and evaluate the degree to which this competence is in use during the trainee's work with the infant and family. uses and misuses of language as previously pointed out, during the ap, the infant is observed over the course of several weeks. this kind of "narration" over time about the infant in interaction with their environment, their family, and the professional caregivers, provides a context in which to examine our language and to recognize ourselves in it. the written text of the observations provides a further opportunity to identify the extent to which we succeed in being facilitators of development. the ap enables us to take a broad and integrative view. at this stage of nidcap training, we can more fully examine our discourse and language. i will briefly address this personal perception in relation to three components of care that have already been mentioned: the baby, the parents, and the professional caregivers. regarding the infant, the ap places us in a position where we must choose carefully the words and expressions to use in our communications (reports) about their de velopment. it therefore prompts us to pay attention to how fully our perception of the infant as a competent being is reflected in the language we use.5,6 consequently, it leads us to explore whether we have been able to reflect about their strengths and vulnerabilities. exploring the language we use in ap, ultimately means assessing the extent to which it reflects the nidcap model of care. regarding the parents and professional caregivers, the training program guidelines1 encourage us to articulate nidcap reports that are clear and supportive for them; that enable their understanding of the infant's behavioural language; and that foster their creativity and confidence to support and promote infant's development. the guidelines further recommend that what we communicate and write does encourage parents to feel pleasure and confidence in their parental role in the complex environment of the neonatal unit.2 none of the above can be achieved without the thoughtful use of our own language, both in written reports (which make up the ap) and in the dialogue we engage in with parents and members of the professional team. the language we use can, in turn, contribute to professional growth and to the transformation of the unit's culture of care. therefore, i suggest that when evaluating the ap, it might be helpful to answer some questions central to our commitment to support infant's development. among them, the following stand out: have we been able to convey the strengths and vulnerabilities inherent in the infant's behavioural language? have we been sufficiently skillful in articulating the next steps in the infant's developmental trajectory? have we mustered the necessary sensitivity and delicacy to suggest care recommendations that contribute to the infant's development? finally, it is also worth asking in short, as i have tried to argue, the ap confronts both trainees and trainers with the challenge of individualization. it is at this stage of the training process that we can most clearly demonstrate our ability to perceive care in an individualized way. 18 • 2025 • developmental observer whether we have undertaken the necessary process of introspection that allows us to prioritize our role as guides and facilitators of care7 as an integral part of our professional identity. here, then, lies a second hidden treasure of the ap: the language used in writing down observations and communicating them offers a window from which to appreciate the deeper and more genuine insights we have into the care we provide to the infant and family within the nidcap model. building a dialogue trainees and trainers bring their own perceptions and perspectives of care into the nidcap training process. as trainers, we face the challenge of being warm, sensitive and respectful, to identify and understand our trainees' perceptions and at the same time make our own perceptions explicit, without imposing them or assuming that they are taken for granted. a question i have asked myself in my role as nidcap trainer is the following: how can a dialogue that is necessary and vital, be initiated, promoted and kept alive in a training that is partly carried out remotely? in my case, i have used the resource of written margin notes inserted in the trainee's text. i have used these notes as a first and very basic platform from which to build a basis for a dialogue that will be established later, through conversations in person or remotely. these notes have provided me with a modest foundation from which to foster a reflective, open, and enlightening dialogue between trainees and me. i have learned, in turn, that some trainees may be unfamiliar with this "method" and may feel some discomfort at receiving a paper that includes numerous notes. coming from traditional educational systems, many of us have been brought up on the premise that the more flawless and less marked a paper is returned to us, the better. a paper that contains a lot of remarks from the teacher or mentor is, according to that conception, a less successful one. however, in my experience, notes are vital to encourage reflection and dialogue, which is why i try to include them. not to do so would mean, in my view, giving up to a more open exchange of ideas about what has been observed about the baby and family. i have often felt the need to explain this point of view, and to reassure the trainee that these notes are an inherent element in the construction of a freer dialogue, which will lead to deeper learning. without the mutual exchange of perspectives, the learning process is impoverished. from my perspective, it is in these trainer's margin notes that lies another hidden treasure in the ap: the use of a simple instrument as a platform from which to foster dialogue. threading reflections the practice of nidcap consists of observing, articulating what we have observed and reflecting on it. the sequential observations of the ap allow us to look in a structured and individualized way at the infant's behaviour and developmental needs over time. it is reading these observations that allows the trainer to assess what the trainee has observed and inferred. however, it is the written reflections attached to each of the ap observations that give the trainer a glimpse of what the trainee has felt and experienced. reflection, supported by the topics provided in the "journal page",8 provides a unique window into the inner world of the caregiver, in this case the trainee. the opportunity to reflect what the ap affords, tests our ability to think more freely, to remove boundaries from our minds and spontaneously express those thoughts that the observation provoked. perhaps it is in this implicit invitation to freely reflect that its apparent complexity lies. it is not unusual for trainees to express a certain "difficulty to reflect". indeed, they have often asked what sort of thoughts would be pertinent to this section of the ap. it is the need and desire to look at a seemingly familiar situation from new perspectives that triggers the demand to reflect on professional practice. doing so requires a certain amount of introspection, sensitivity and tolerance. above all, to reflect means to be willing to pause, to slow down. perhaps in each of these attributes lies the difficulty of exercising reflection that sometimes manifests itself during the training process. however, if approached with genuine freedom, reflection, an essential component of nidcap training, is simpler than it may seem at first glance. my advice would be to approach reflection with an open mind and especially with an open heart. to allow ourselves the freedom to consider whatever comes to mind from the observation we have made. that we do not impose strict limits, nor do we necessarily adhere to a certain method or structure in doing so. let us make a small "inventory" of the thoughts and feelings that each observation has awakened in us. at this point, let us choose which of them from my perspective, it is in these trainer's margin notes that lies another hidden treasure in the ap: the use of a simple instrument as a platform from which to foster dialogue. 2025 • developmental observer • 19 we would like to pause and reflect on in our writing. it would suffice, in my view, for trainees to address one or two "themes" from their "inventory" in each observation. in so doing, each observation and its corresponding reflection would surely present us with the hidden treasure of discovering a new nuance, a new facet in our trainee. thus, as we read the ap, the trainee's reflections on each observation get threaded through our reading in a kind of imaginary necklace. these reflections provide us with another tool to appreciate the various ways in which the trainee perceives the infant, their developmental trajectory and the care interactions they experience. cultivating pride one of the main goals of the ap is that the trainee learns to support the baby and family, as well as the professional team that collaborates with them, to help them feel more competent in caring for their baby and to promote their development.1 as a nurse practicing from the nidcap model perspective, i have identified that one of the most valued and effective ways to provide such support is to cultivate a sense of pride in both parents and professionals. there are many reasons to feel pride and satisfaction in the day-to-day life of a neonatal unit. for example: for the care provided; for the ability to individualize decisions; for keeping the focus of care on the infant and family; for the emerging abilities that the infant is showing day by day, despite the fragility of prematurity or the medical complexities they may present. the ap, with its methodical follow-up of the infant over several weeks, allows us to bring that pride to the forefront, and offers us (both parents and professionals) an arena in which to rejoice in the infant's achievements. the ap invites us to showcase the joy of being part of the joint effort to help that infant and their family express their most optimal developmental potential. in the complex environment of the nicu, where urgency can often take the place of important experiences, the ap presents us with another small treasure: a context in which to pause, to highlight and cultivate joy and pride in the infant we care for. conclusion the ap of nidcap training provides an experience full of learning opportunities for both trainees and trainers. acquiring better competence and ability to individualize care, using language more appropriately, reflecting, fostering dialogue and cultivating pride are from my perspective some of the most salient ones. however, the concepts and competences that we develop at this stage of nidcap training are not limited exclusively to the ap, but in fact transcend it. if we extend these concepts and competences further, we will be able to exercise and implement them in additional contexts of our professional practice. in this way, we will benefit and enrich each of the care interactions in which we take part, and each of the learning experiences that we facilitate. in this sense, the ap holds great potential to turn us not only into nidcap professionals, but also into better caregivers within the multidisciplinary care team of the neonatal unit and elsewhere. acknowledgement i sincerely thank maría maestro and josep perapoch from the nidcap federation international for providing me with their valuable reflections, which i incorporated into this manuscript. i also thank consuelo lópez from the university of cádiz for reviewing this work and suggesting important improvements to the text. references 1. als h. program guide. newborn individualized developmental care and assessment program (nidcap): an education and training program for health care professionals. copyright, nidcap federation international, 1986, rev 2009. 2. als, h. guidelines for advanced nidcap practicum: following an infant and family from admission to discharge and transition to the home. copyright nidcap federation international, 2010. 3. als h. toward a synactive theory of development: promise for the assessment and support of infant individuality. infant ment health j. 1982; 3(4):229-43. doi: co;2-h 10.1002/10970355(198224)3:43.0. 4. flacking r, lehtonen l, thomson g, axelin a, ahlqvist s, moran v et al. closeness and separation in neonatal intensive care. acta paediatrica, 2012; 101, 1032-1037. 5. brazelton tb. preface. pediatrics, 2005;113, 632-633. 6. tronick e. the neurobehavioral and social-emotional development of infants and children. 2007; w. w. norton & company. new york. london. 7. als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology, 1997; 21 (3):178-189. 8. als h. documentation of nidcap observations: journal page. copyright nidcap federation international, 2018. one of the main goals of the ap is that the trainee learns to support the baby and family, as well as the professional team that collaborates with them, to help them feel more competent in caring for their baby and to promote their development. our actions impact those beyond ourselves. in other words, ethics is other regarding; and, it is also normative in the sense that how we act is expressive of notions of good, value, meaning, and so forth. for this paper, let us consider the question: “is it ethical to not provide infant and family centred developmental care initiatives?” these initiatives can be understood broadly as those activities designed to support the medical and developmental needs of infants, especially preterm or critically ill newborns, while also involving their families as essential partners in care. let us take kangaroo care as an example. kangaroo care, the practice of skin-to-skin contact between a newborn and their parent, generally raises few ethical concerns.7,8 we could say it is expressive of a fundamental human encounter. consider a mother’s words, kangaroo care, holding him skin-to-skin, is our time. it’s so settling to feel his warm skin against mine. i get him nestled in, on my chest, and just lay my hands over him. his breathing steadies. he holds a breath, i hold a breath. i find myself sighing without even meaning to just as he exhales. it’s like my body senses his and harmonizes with his. i do not normally even give it any thought. we just are together sensing each other’s heart beat. sometimes i will read a book with my free hand. other times, a friend will be there and we talk quietly. i don’t really need to concentrate on him; i am feeling him as he is feeling me. to have him close – it just feels so good, so calm. sometimes we just need to lie there together and let the day pass by. (from van manen, 2021, p. 59)9 reading this mother’s words, we may hear how all of the wires and tubes, the pumps and monitors, the nurses and doctors may fade into the background to reveal a mother who is in touch with and touches her child in a moment of bodily presence. they lie attached in touch. they breathe in touch. they are touched by each other’s touch. and from this attached being of touching emerges the being of mother with child. do we dare question its ethics? well, if we regard kangaroo care as an initiative, if we think of it as a healthcare practice, we recognize that its ethics may be valuated based on how it meets principled considerations. in this issue, we highlight the exciting initiatives taking place within a developmental care framework using the nidcap model. each contribution reminds us that families are central to the care of their newborns and that supporting them is at the heart of everything we do. michael van manen invites us to reflect on important ethical questions as we support parents providing kangaroo care in a busy nicu environment. katie reginato cascamo explores the vital role of parental intuition, showing how clinicians can recognize and build upon it to strengthen parents’ involvement in their baby’s care. from doha in qatar, bindu george and her team describe their innovative family-integrated model, offering insight into how developmental care can be embraced within a culturally diverse setting. we also hear directly from families themselves, as stephanie ernst shares her story and deeply personal journey through the nicu. from salzburg, austria, the amadea nidcap training centre shares their own journey and new initiatives, while joy browne and the team from ghent provide thoughtful questions for reflection as they mentor trainers-in-training. together, these accounts highlight how nurturing those who teach and learn nidcap strengthens the training process—and ultimately benefits babies and their families. we also hear from marjorie palmer, who provides an insightful perspective on recognizing early signs of autistic spectrum disorder through infant sucking cues, reminding us of the subtle ways infants communicate their needs. finally, i extend an invitation: would you like to be part of the developmental observer team? we are seeking members to join our review group. no prior reviewing experience is necessary—our team will support and guide you through the process. if you are interested, please send an email with your expression of interest. kaye spence am facnn senior editor – developmental observer, adjunct associate professor australasian nidcap training centre/ university of western sydney editorial cover image: amadea team, nidcap training center, salzburg, austria doi:10.14434/do.v18i3.42174 families at the heart of nidcap (continued from p.1) (continued on p. 3) 2 • 2025 • developmental observer is it ethical to not provide infant and family centred developmental care initiatives? f a m i l y v o i c e s doi: 10.14434/do.v18i2.41637 developmental observer 20 25 | v o l 1 8 | n o . 2 the official publication of the nidcap® federation international just ten minutes of guidance can build parental confidence that lasts for years. -oleksandra balyasna inside family voices ................................................. 1 editorial ............................................................... 2 the infa-neo program ....................... 6 welcome lívia nagy-bonnard .... 8 meet the nfi members: ....................... 9 julia giesen the transformative power of ...... 10 nidcap: an australian medical perspective the advanced practicum in ........ 12 nidcap training práctica avanzada de la ................ 16 formación nidcap from the science desk ................... 20 nidcap care in the moment ..... 24 nidcap training centers ............... 26 doi:10.14434/do.v18i2.41635 i had never heard of preterm birth during any of the pregnancy preparation courses i took with my partner. a few days before giving birth to diana, our daughter, i shared with my gynecologist that i was feeling inexplicably anxious. i didn’t understand where that feeling was coming from. the doctors never mentioned the risk of premature delivery, so i was utterly unprepared, mentally and emotionally. after all, who expects to deliver a baby at 28 weeks? my daughter was just over one kilogram when she was born. it was a cocktail of stress, shock, and uncertainty. i felt completely out of control, like i was the first person on the planet to deliver a baby so early, so tiny, so vulnerable, and so fragile. i had no idea how to reduce my daughter’s pain or bring her comfort. it was not the kind of maternity experience i had ever dreamt of. after delivering prematurely, i couldn’t stop crying. every time i tried to speak, my words dissolved into tears. what helped me was seeing a psychologist i had known before. on the third day after my baby’s birth, i shared my biggest fears out loud and expressed everything i was feeling. that conversation was deeply comforting and brought me much relief. i didn’t experience the “uncontrolled crying mode” again and felt much more emotionally balanced. visiting the nicu at the time of diana’s birth, she spent time in the neonatal intensive care unit, the when every gram counts: reflections on my daughter’s early arrival by oleksandra balyasna, ukraine (continued on p.2) perinatal center was still closed, and only an hour a day was allowed for us to visit her at lunchtime. during this hour, i also had to talk to the doctor about her medical treatment, get a new list of medical items i had to purchase for my baby, and bring in the pumped milk i was expressing. the time that was left was focused on connecting with my baby. during my first visit, i could only watch my daughter from a distance through the glass of the incubator. on the third day, a nurse encouraged me to touch her skin, hold her tiny arm, and gently place my palm on her. without guidance, i was terrified i might hurt her with all the tubes and catheters keeping her alive. a particularly traumatic experience for me was being placed in a room with an empty bed, right next to rooms full of mothers who had delivered healthy, full-term babies. i could hear crying babies all around, while mine was in the intensive care unit. i felt utterly useless. what can i do? am i even a mother yet? learning how to gently touch diana, respond to her behaviors, and build trust in our interactions became one of the most emotionally meaningful experiences. it also laid the foundation for her emotional resilience and future development. these small, sensitive interactions help babies born prematurely begin to regulate their senses and bond securely, essential for their neurodevelopment. my most memorable experience in the nicu one of my strongest memories is hearing the words, “you can kangaroo her now—hold her.” that half-hour of holding my daughter skin to skin was pure magic. while the nicu was busy all around me, i was in another world while i held my daughter, feeling her heartbeat, breathing in her scent, and bonding with her deeply for the first time. at the time, i didn’t fully understand the power of skin-toskin care, but i instinctively understood how important it was. later, i learned that kangaroo care supports the baby’s ability to regulate heart rate and body temperature and even supports healthy brain development. if i had known more then, i would have done it more often, during the dedicated hour and as often as possible. navigating my fears in the nicu my biggest challenge was to gain the confidence to touch my daughter. i was unsure if this was hurting her, and it took me some time to get comfortable with how to lift her, place her back into the incubator, or change her. she seemed so fragile. as diana grew, breastfeeding seemed intuitive for her. however, it was challenging to learn how to balance tube feeding, bottle feeding, and breastfeeding while she was not gaining weight rapidly. bottle feedings were frustrating when it seemed the focus was on getting her to eat more, and then she would lose almost half of the feed by spitting up. we learned we had to be more patient and let diana learn how to suck, swallow, and to increase the volume while breastfeed at the same time. by the time diana was discharged home, she was only breastfeeding without tube feedings or bottle, which felt like a tremendous victory and an important milestone. my family was my biggest support and was always next to me. my father, even though being scared of the small size of our daughter, was happy to support me with other tasks. for example, he washed, ironed, and disinfected all the clothes for our little fighter. my mom was cooking, and my sister was searching for tiny socks, clothes, and special pacifiers of a tiny size. each day, diana’s father came to the hospital after his job to check on us. one of my fondest memories is when he came during the christmas holiday wearing a christmas hat and spent new year’s eve with me and his daughter. new challenges with the transition to home after diana’s discharge home, our next challenge was finding the right family doctor who understood the specific needs of a premature baby. we had to organize the follow-up care ourselves: monitor her vision (retinopathy of prematurity), heart development, orthopedic assessments, and her neurological development. there was no follow-up center at the time, and it felt like a huge responsibility to build our own care system. our biggest fear was: did we miss anything important? cover image: oleksandra balyasna and her 5 month old daughter, diana.. used with permission. (continued from p.1) (continued on p. 4) supportive touch in the nicu, november 2012. 2 • 2025 • developmental observer learning how to gently touch diana, respond to her behaviors, and build trust in our interactions became one of the most emotionally meaningful experiences. 2025 • developmental observer • 3 in this issue, we feature articles that explore nidcap training across diverse settings. dalia silbertstein shares her reflections on the nidcap advanced practicum (ap) in spanish and english, challenging us to consider new perspectives on training approaches. hannah dalrymple offers insights from the viewpoint of a medical practitioner during her ap, guiding us through the challenges and triumphs of her experience. jeffery alberts challenges us to consider the hot topic of delirium in the nicu. angela gregoraci contributes a thoughtful piece on implementing broader aspects of individualised developmental care based on the nidcap model. she highlights various strategies to support parents and staff, enriching our understanding of how this model can be applied. oleksandra balyasna, a mother from ukraine, shares her journey and recommendations for supporting parents. continuing our ongoing feature introducing nfi members, this issue profiles julia giesen. alongside the profile, we are privileged to share julia’s evocative poetry inspired by her experience with the assessment of preterm infant behaviour (apib). we also take a moment to say farewell and express deep gratitude to gretchen lawhon, who is stepping down from the editorial team. gretchen has been a foundational member of the developmental observer since its launch in 2007. her dedication and contributions have been extraordinary. thank you, gretchen, for your enduring commitment and wisdom. we welcome livia nagy-bonnard to the editorial team as the family voices column co-editor. livia brings a wealth of experience and a strong commitment to family-centred care. as always, i welcome suggestions for features, content, and potential reviewers. please don’t hesitate to contact me— i would love to hear from you. kaye spence am facnn senior editor – developmental observer, adjunct associate professor australasian nidcap training centre/ university of western sydney editorial doi: 10.14434/do.v18i2.41636 new voices, lasting legacies jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. lívia nagy-bonnard, is founder and vice-president of the melletted a helyem egyesület association for preterm babies in hungary. livia is a patient expert for the european patients' academy on therapeutic innovation, a member of the global foundation for care of newborn infants, and a member of the parent advisory board and is a member of the family advisory council of the nfi. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, has a degree in developmental psychology and is a nidcap master and apib master trainer with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board 4 • 2025 • developmental observer building that follow-up network, finding a neurologist, orthopedist, or ophthalmologist, was overwhelming but essential. the earlier developmental concerns are identified, the better the outcomes with timely interventions. regular checkups became a part of our new routine. support the following were helpful to me during diana’s hospitalization in the nicu: peer-to-peer stories. hearing other positive preemie stories gave me hope. i still remember the moment i saw a child return to the nicu with her parents. i couldn’t believe that my tiny one-kilo baby could one day be like that. a close friend of mine once told me she had been born prematurely. she’s now a smart, beautiful lawyer with a kind heart. i called her and said: “tell me everything. how was it for you?” just hearing her story was deeply therapeutic. she reminded me that premature babies can survive, thrive, and shine, leaving no visible trace of being born too soon. my recommendation to parents going through the nicu journey: • while positive preemie stories can be supportive, peer groups are also very helpful. check preemie parent organizations that operate locally next to you. • it is important to prioritize getting mental health support. ask for psychological support for you and your partner together. this is not something you go through daily, and any preterm labor is stressful. • involve your family and friends, whether this means having them babysit your older kids, cook, or perform other helpful tasks. • maybe your journey is not going as planned, but you are definitely not alone in it. please feel the support of our huge community, which is behind parents who are going through or have similar experiences. having other parents to talk to and share stories with is inspiring. what could be helpful in the nicu: • invite parents to walk this journey together with the care team. show them how to talk to and touch their baby, and how they can contribute to their baby’s care. just 10 minutes of guidance can build parental confidence that lasts for years. • provide access to peer support groups and display information in the unit so parents can view it. • offer psychological support and printed materials for families. this is a new, unfamiliar world for them, and knowing what they can do helps restore a sense of control and hope. while in the incubator, our daughter moved a lot and showed her character. she speaks four languages fluently, likes to read books and history, write stories, draw, and collect stones. “our biggest fear was: did we miss anything important?” oleksandra with her daughter diana, aged seven. column editors: livia nagy-bonnard and debra paul diana fought bravely for her life as a fragile newborn—and today, she continues to show that same strength as they begin a new life in another country, far from home. diana and her mom are now living as refugees after fleeing the war in ukraine. starting over in unfamiliar surroundings is never easy, but diana’s resilience reminds her mom every day of the power of survival, hope, and love. her journey began in an incubator, surrounded by uncertainty, and now she walks forward with confidence and creativity, shaping a future full of promise. 2025 • developmental observer • 5 our sponsors dr. brown’s medical delivers valuable feeding solutions that help provide the best possible outcomes for all babies. nidcap federation international board of directors and staff 2025 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org president-elect jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens. harvard.edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwide childrens.org secretary mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com monique oude reimer, rn nidcap trainer sophia nidcap & apib training center rotterdam, the netherlands charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com staff sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 6 • 2025 • developmental observer i recall when i began my nidcap training 12 years ago in barcelona alongside my mentors, graciela basso, josep perapoch, and fátima camba. i read the nursery assessment manual for the first time. this manual is a key instrument for evaluating the quality of a nursery’s developmental orientation and care implementation. at that time, our average summary scale score was 2.5 on a 1-5 rating, and we were concerned about how to move forward and achieve a higher score. how can we consistently promote the best shortand long-term development for all infants and families, while supporting care professionals and staff in ensuring their personal and professional growth to implement relationship-based care effectively? the answers came little by little... in 2020, i received a grant from the spanish neonatologist society and decided to travel to our european references in infant and family centered developmental care (ifcdc)1— the scandinavian countries. there, i met stina klemming, liisa lehtonen, and sari ahlqvist-björkroth, and they all demonstrated to me that a successful integration of a neuroprotective, developmental, and supportive care philosophy is possible. i learned that the best chance for successful implementation requires patience, endurance, and persistence, and that a broader strategy, which reviews unit culture, enablers, and barriers to sustainability, is essential.2 for ifcdc to be implemented effectively, we must focus our efforts and attention on a) understanding infants’ needs and rights through their behavioral communication and cues, giving the newborn a voice, as dr. als reminds us; b) supporting parental well-being and the infant’s development through parent engagement; c) changing hospital culture through healthcare staff training and support. the inclusion of family in neonatology program (infa-neo) was developed at trueta hospital in girona, a nidcap training center, to achieve these three main goals. our philosophy is the nidcap philosophy. we use individualized care plans based on developmental assessments of an infant’s behavior. a strength-based approach to healthcare recognizes the family as the constant in a child’s life. it focuses first on the positive attributes, capacities, and resources of the infant, family, and community, rather than solely focusing on deficits and needs. we were also inspired by other parenting interventions, such as close collaboration with parents,3 which routinely included parents in the observations to increase their knowledge and understanding of their baby’s cues, which affect their interactions. care recommendations were given to parents and shared with the healthcare team. meanwhile, the entire staff was trained to observe infants together with the parents through the fine program. trueta hospital is the reference hospital for the girona health region, attending 1,650 births annually, 56 of which are premature babies born at less than 32 weeks of gestation or less than 1,500 grams. implementing the nidcap model in the neonatology unit of trueta hospital started in 2016 in collaboration with vall d'hebron hospital in barcelona, which is a nidcap training center and part of the padeics-nidcap program network,4 an expert advisory program jointly promoted by the healthcare medical directors of the six hospitals affiliated with the catalan institute of health. in this context, the infa-neo intervention was developed in 2023, focusing on integrating families and providing individualized developmental care for high-risk babies. a specialized team leads the infa-neo program, comprising one full-time nidcap nurse, one part-time nidcap neonatologist, a psychologist, a pediatrician with fine 2 training, and a local parents' association representative. it consists of common elements for all families and more specialized interventions for the most vulnerable infants born before 30 weeks of gestation. the principal components of the intervention are: the infa-neo program: supporting infants and parents from the nidcap perspective angela gregoraci, phd, neonatologist and nidcap professional trueta hospital girona, spain doi: 10.14434/do.v18i2.41641 joint observation with a mother 2025 • developmental observer • 7 1. individualized developmental infant care: weekly joint observations of infants under 30 weeks with parents, focusing on understanding the infant’s behavior. 2. parental guidance and education: weekly reflective sessions with parents of premature infants <30 weeks, led by one nidcap professional. these sessions help parents learn to identify each infant's needs and characteristics, listen to parents’ perceptions about their infant, and provide them with a psychological space to create a shared care plan and understand their unique journey to becoming parents. the goal is to build collaboration, integrating parents' observations about their infant’s behavioral responses in caregiving decisions. the individual needs of infants and families, identified during these meetings, and the subsequent recommendations are shared with the staff to enhance their understanding and empathy for the parents' and infants’ experiences, ultimately improving how developmentally centered care is provided. 3. parental presence and caregiving: progressive and individualized parent coaching at the bedside teaches parents the skills required to provide many aspects of their infant’s care. additionally, parents are invited to attend weekly parental classroom meetings, where they are educated by various specialists on different subjects. families also have access to a library to encourage reading to their babies and a diary for entries about their baby’s progress. 4. parental support: the infa-neo team's psychologist provides individualized psychological support for parents and weekly family group therapy. 5. healthcare staff, time, and education: training and educational activities for all staff to foster a care culture in the neonatal intensive care unit (nicu) and enhance the healthcare team's skills in family and infant neurodevelopmental care. since may 2023, 48 infants born at or before 30 weeks' gestation have been born at our hospital. of these, 36 were included in the infa-neo program. of the 28 pregnant women admitted to the obstetric ward before delivery, 25 (89%) received the first structured, interdisciplinary-focused antenatal meeting. during their nicu admission, an average of three meetings per family were held, and five nidcap care recommendations were shared with the healthcare team per family. eighty-eight percent of infants had their first skin-to-skin contact with their parents within the first week, and 61% within the first 72 hours. initially, families with significant language barriers were excluded, but given the multicultural nature of our population, we could not deny them the program’s benefits. therefore, we adapted and included 25% of the families. forty-four percent of the infants discharged were on breast milk, and 20% received both breast milk and formula. eleven families (44%) were also included in the home-hospitalization program after an average of 80 days of admission (38 weeks of postmenstrual age). one hundred percent of families followed up with the interdisciplinary consultation. families said about the program: “we knew it would be a long stay due to our little one's prematurity, but we always had the support of the entire staff, and that helped us a lot to know how to manage the situation.” –ailany’s parents “it has been a tough experience, and day by day we have overcome our fear, and every day we have been more confident and more eager to reach the end of the road.” –darian’s parents “babies are put at the center and the rest are satellites, and that innovative and powerful approach that is nidcap always seeks the best for these little ones, including the importance of how to get families to also listen to them, to care for them, to also be protagonists in the process of their little ones' evolution.” –samara’s mother nevertheless, we still face many challenges. some parents have experienced variable levels of individualized support in the unit, probably because not all staff have completed the family and infant neurodevelopmental education (fine) 2 training and are not yet sensitive or receptive to the nidcap recommendations. inconsistent practices have been identified as a barrier to implementing ifdcc. inadequate facilities and unit design (our nicu is an open-bay unit without single-family rooms) make it difficult for families to be present. additionally, the unavailability of interpreters and a lack of empathy make communication between staff and families challenging. however, the cultural and attitudinal environment of ifcdc is more important than the physical environment. ifcdc can be successfully implemented, even in crowded nicus with older facilities, if the clinical team is committed and willing to invest in creative solutions.5 strong evidence shows that outcomes improve for infants reflective session with parents 8 • 2025 • developmental observer and families when families are involved in their hospitalized infant’s care.4 the nicu team cannot fully meet the infant’s physical and developmental needs during hospitalization or adequately prepare families to care for infants after discharge without strong family engagement. a developmentally supportive philosophy of care leads to better health outcomes, improved patient and family experiences of care, better clinician and staff satisfaction, and wiser allocation of resources when families are fully integrated into the care delivery system and treated as essential and irreplaceable partners in all aspects of healthcare delivery—from the bedside to the health system boardroom.2,5 the infa-neo program is a multidisciplinary intervention designed to support the development of pre-term infants, the parent-infant relationship, and the training of nicu staff throughout the entire pathway, including prenatal, birth, nicu, discharge, and follow-up care. it is still very young, but we are confident that it could facilitate the implementation of the nidcap model in our nicu and in other similar neonatal units. as dr. heidelise als6 said, “one infant and one family at a time; one nurse and one doctor at a time; one nicu and one hospital at a time; one city and one country at a time. this is the way to create the necessary change.” all quotes used with permission. references: 1. https://newborn-health-standards.org/standards/standards-english/infant-family-centred-developmental-care/ 2. griffiths n, spence k, loughran-fowlds a, westrup b. individualised developmental care for babies and parents in the nicu: evidence-based best practice guideline recommendations. early hum dev. 2019 dec;139:104840. doi: 10.1016/j.earlhumdev.2019.104840. epub 2019 aug 21. pmid: 31445697. 3. ahlqvist-björkroth s, axelin a, lehtonen l. close collaboration with parents-implementation and effectiveness. acta paediatr. 2025 apr;114(4):699-709. doi: 10.1111/apa.17210. epub 2024 mar 21. pmid: 38514910; pmcid: pmc11894782. 4. perapoch j, camba f, gregoraci a, anglès r, and the padeics-nidcap group. nidcap: always a journey. developmental observer. 2025, 18 (1): 20-21. doi: 10.14434/ do.v18i1.40895. 5. franck ls, axelin a, van veenendaal nr, bacchini f. improving neonatal intensive care unit quality and safety with family-centered care. clin perinatol. 2023 jun;50(2):449-472. doi: 10.1016/j.clp.2023.01.007. epub 2023 mar 21. pmid: 37201991. 6. https://nidcap.org/testimonials welcome new member of editorial team and co-editor of the family voices column w e are delighted to have livia nagy-bonnard join our editorial team on the developmental observer as co-editor of the family voices column. livia is founder and vice-president of the melletted a helyem egyesület association for preterm babies in hungary. she is the mother of four, including a son born prematurely at 27 weeks’ gestation who is now a young adult living with multiple disabilities. livia is a patient expert eupati (european patients' academy on therapeutic innovation) fellow, also a member of the gfcni (global foundation for care of newborn infants) european standards of care for newborn health project’s parent advisory board and is an nfi (nidcap federation international) family advisory council member. livia coordinates fine (family and infant neurodevelopmental education) training in hungary and received an efcni award for organising the adaptation of fine for online training in hungarian. she has completed fine 2 and is currently involved in a fine 3 quality improvement project on neonatal pain management at semmelweis university hospitals in hungary. livia brings a wealth of knowledge and connections to our team. lívia nagy-bonnard 2025 • developmental observer • 9 m e e t t h e n f i m e m b e r s i am julia giesen, a speech-language pathologist with 17 years of clinical practice working with pediatric patients in their homes, community programs, rehabilitation, and acute care settings. i am an adjunct professor in the department of communication sciences and disorders at the university of alberta. my primary role is as a feeding and swallowing specialist in the philip c. etches neonatal intensive care unit (nicu) at stollery children's hospital. i am certified as a nidcap professional and as an instructor and mentor for family and infant neurodevelopmental education (fine). i draw on this learning to coach families and nicu staff in providing developmentally supportive, responsive care for infants. i wrote this poem as a reflection after my first apib (assessment of preterm infants' behavior) training session with dr. juzer tyebkhan and dr. deborah buehler. juzer conducted the apib on a little one who had been in our nicu for three months. his parents were in the room during the apib. at the end, juzer called his father over and he spoke to his son in his first (emotional) language. that evening, i reflected on what an apib shows us; this is the result. julia giesen msc. slp, r.slp, s-lp(c) julia giesen doi: 10.14434/dov17i3.39756 hello, nice to meet you can you tell us your story? how long have you been here? what’s it been like for you? it’s been all my life. three months to the day. my mom and my dad have never gone away. i see that you’re sleeping, hard to do that in here. with all the bright lights and the sounds in your ear. it’s hard to keep going here all on my own i try to keep breathing but can’t keep my tone. now warm hands around me as my heart starts to race wrapping me in a blanket my hands close to my face. speaking softly, speaking gently hold me close as i wake a new face as my eyes open and a few breaths i take. well hello, now i see you can we try a few things? can you stay here with me even when the apple rings? you said, “yes, i can try i’ll try all on my own i’ll show how far i’ve come how much i have grown.” in these 90 days since the day i was born with all of the milestones that my necklace adorn. and when it’s enough when it all becomes the same, i hear my father’s voice; he’s calling my name. that’s me! that’s my dad! i turn to my right i smile so broadly then with all of my might. i call right out to him as his tears trace a line. i’m here dad, i hear you i’m yours and you’re mine. “can you tell us your story?” illu st ra tio n ve ct or st oc k/ gt hd 10 • 2025 • developmental observer i never planned to become a nidcap professional. the first time i heard about the process, i thought it was too big a commitment to fit in amongst a busy medical role and motherhood to two young children. but life has a funny way of leading me to career decisions i don’t expect. when i unexpectedly became a neonatologist in the grace centre for newborn intensive care, i was immersed in the developmental care culture of the australasian nidcap training centre. slowly, i was integrated into the developmental care team, and as i witnessed the impact of the work, i was encouraged and supported to undertake the training. in australia, only one neonatologist had previously been trained, and i saw it as an opportunity to extend my scope of practice into an important area of neonatology. the nidcap process was transformative for me as a clinician and parent. while observing, i was self-conscious about my role as a neonatologist in the unit. i felt i was different from my fellow nidcap nursing trainees due to my preconceptions about the medical hierarchy. observing and interpreting how clinicians cared for babies and their potential impacts felt uncomfortable. still, i learned to lean into my relationships with curiosity and kindness, slowly becoming accustomed to guiding staff using my expanding knowledge and experience. i began to understand that our unit hierarchy differs from many departments, having a culture built on maintaining relationships with all staff, thanks to an incredibly inclusive head of department. as my boss would say, “it is for the babies,” and that is the mantra that permeates the culture of the department. balancing the clinical complexity of our patients in a surgical nicu with normalizing experiences for the baby was also challenging. towards the end of our reliability training, we observed a baby boy due to be discharged from the nicu that day. he was using “a range of behaviours to communicate with his carers when he is not coping well with caregiving”, displaying clear cardiac physiological vulnerability. focusing on his strengths, i recommended normalizing feeding opportunities. still, following transfer to the ward, he had a clinical deterioration, was readmitted to the paediatric icu (picu), later deteriorated further, and eventually, he sadly did not survive. the niggling feeling during my observation that he wasn’t coping was subtle and in retrospect i felt regret that i had not acted more strongly on this. it was an excellent reminder to trust those instincts when noticing subtle signs in babies, bringing a different perspective to my clinical decision-making. advanced practicum i was nervously excited to commence the advanced practicum (ap) component of the nidcap training. leading into the ap, everyone had told me that being able to support a family throughout admission was such a valuable, enjoyable, and privileged undertaking, but i was anxious. my first observation of keziah was a massive relief; i hadn’t forgotten all i had learned during reliability training. the ap also brought new challenges, such as observing in units other than my own with nursing staff unfamiliar with neurodevelopmental care and the nidcap observation process. following the postponement of surgery for keziah, my second observation found me arriving fatigued and sweaty after cycling on an exercise bike carrying a former patient to raise money for our nicu. of course, having missed the nursing care, it was my longest observation. i observed keziah for 60 minutes while he was being breastfed, and his attentive parents performed care. an excerpt from my reflection on the observation: “the observation was prolonged and tiring due to the parents gently struggling to wake keziah up for a feed. they interacted with him beautifully and were very gentle….. my biggest surprise during this observation was how the space and design of the room were more developmentally friendly….. the transformative power of nidcap: an australian medical perspective dr hannah dalrymple, mbbs bsci(med) fracp mph doi: 10.14434/do.v17i3.39757australasian nidcap training centre. family cuddles on day 5 of life 2025 • developmental observer • 11 the room noise and activity were lower… and there was a lot more space at the bedside allowing each of the parents to have a chair. ….. but much more clinical than grace with no pictures on the walls. the nursing staff were both friendly and receptive to my presence, showing interest in developmental care learning….. different to my expectations.” i visited the family throughout the admission, even when not undertaking observations. the most challenging time was visiting keziah when he was puffy and had an open chest post-bypass surgery. his mother was “visibly very stressed and chewing her nails and bouncing her legs.” i knew from being on service at that time that the cardiology team was worried about him, too. it was difficult for me to see him like this, and i felt inadequately prepared to support his parents, who were finding it much harder. although my medical summaries had always been a strength, according to my trainer, i felt voyeuristic in this period, having not worked in the picu before and being out of my comfort zone clinically. challenges my expectations were constantly challenged throughout this process, both in terms of what i expected from the hospital system and what i had expected from this beautiful family. they taught me that attentive, sensitive parenting can come naturally to any parents, despite the challenges of having an unwell baby, as this couple took everything in their stride. they were hungry for information and support, and despite feeling like i was imposing on them, i could provide additional care beyond the standard healthcare provision by the system. after discharge, i supported mum with her questions via email and phone, despite the family being well-engaged with the hospital's ambulatory care service. this initially made me uncomfortable, as i felt it was beyond my scope, and i directed her to appropriate resources. however, my trainer pointed out that it reflected her trust in me and the development of a bond. the relationship i formed with this mother has endured, and i have seen keziah twice in developmental follow-up, always to his mother's excitement. to my delight, his development is on track with bayley’s assessment at one year of age. i didn’t expect my recommendations to have such an impact on the patient’s family. still, feedback was that “everything was great”, they “learnt a lot”, and input from a neonatology colleague that the “incorporation of the nidcap recommendations made his care superior” was very rewarding. completing the ap brought more challenges and frustrations, as it examined the systemic issues plaguing the provision of neurodevelopmental care in our healthcare systems. despite evidence that high noise and activity are detrimental to patient outcomes, implementing change is challenging. despite some quality improvement efforts in this area, it is very difficult to achieve traction. sucrose usage for settling remains a problem, and significant areas of neurodevelopmental care require evidence before we can convince the rest of the neonatal healthcare community of the importance and need for simple interventions that support babies and families. an achievement at the end of the training process, i was surprised by how much i felt that nidcap certification was a significant achievement. my ap folder sits proudly on my office bookshelf, and the skills i've acquired through reflection and neurodevelopmental care continue to enhance my clinical career. this process showed me how simple changes can benefit babies and families in our care. it also showed me how important it is to meet the family where they are and support them through learning about their baby together. nidcap presents me with new challenges for ongoing learning through leadership and business skills as co-director of the australasian nidcap training centre. in the future, i hope to encourage my medical colleagues in australia to adopt neurodevelopmental care and its benefits for our young patients. as i wrote in my final reflections during the advanced practicum, “i enjoyed the close relationship with the family, and they hold a special place in my heart. i often think of them and hope keziah will thrive at home.” thank you to keziah and his family for allowing me to be a part of their journey and for sharing their story and photographs. developmental follow-up with keziah and his mother at 3 months of age 12 • 2025 • developmental observer m i percepción de la formación en el marco del modelo nidcap es la de un gradual recorrido de creciente acercamiento a las necesidades del bebé y su familia, así como una más profunda comprensión de la incidencia que tiene en ellas el equipo de profesionales que les cuida. dicha idiosincrasia – la de gradual y creciente – es indispensable en un proceso de formación cuyo objetivo es comprender y cuidar la individualidad del bebé. la formación del profesional nidcap consta de diversas fases.1 una vez que el profesional en formación (en adelante, "aprendiz") ha demostrado una apropiada conceptualización del comportamiento del bebé, y es capaz de formular adecuadamente sus observaciones y recomendaciones de cuidados, la fase siguiente en su formación es la práctica avanzada (en adelante, "pa"). la pa consiste en la observación periódica, siguiendo la metodología aprendida, del bebé y su familia, desde el ingreso a la unidad de cuidados intensivos neonatales (ucin) hasta el alta hospitalaria y la transición al hogar.2 la pa es un importante punto de inflexión en el proceso de formación y un componente singular del mismo. aprendices y entrenadores llegamos a la pa con un buen grado de ilusión y expectativa. acompañados, tal vez, de interrogantes: ¿seremos capaces de crear una genuina relación de apoyo y colaboración con la familia? ¿de qué manera evolucionará la misma? ¿cuáles serán sus matices, a medida que transcurran las semanas? ¿de qué forma expresaremos, sea por escrito como a través de acciones y hechos, nuestro compromiso con el cuidado del bebé y su familia, y con el proceso de formación en sí mismo? ¿podremos construir y asegurar esa envoltura contenedora al bebé, a sus padres, al aprendiz y a los profesionales de la ucin, que propugna el modelo nidcap?3 estas preguntas nos invitan a reflexionar sobre aquellas oportunidades menos aparentes o explícitas, aún por descubrir, que esta fase de la formación nos proporciona a aprendices y a entrenadores en igual medida. si llegamos con curiosidad, con la mente y el corazón abiertos, ¿qué "tesoros escondidos" podremos descubrir a partir de nuestra experiencia con la pa? quisiera plantear en este artículo algunos de los que he descubierto a partir de mis propias experiencias de formación. una llamada a la individualidad la pa abarca varias semanas. se inicia en los primeros días tras el nacimiento, sigue en la hospitalización y el alta, y finaliza en el entorno familiar. durante todo ese tiempo, el seguimiento longitudinal y periódico del bebé a través de las observaciones nidcap, nos aporta un mejor conocimiento de sus necesidades y nos compromete de una nueva manera con la promoción de su constante evolución y desarrollo. la pa pone a prueba nuestra capacidad de adoptar, desarrollar y mantener a través del tiempo, un enfoque individualizado del cuidado. esta etapa de la formación nos convoca a ajustar y afinar más aún esa capacidad, que veníamos desarrollando ya en etapas anteriores de la misma. nos impulsa a adecuar más cabalmente nuestro análisis y a articular nuestras recomendaciones para este bebé que seguimos – que es específico y único. nos sitúa en la necesidad de amoldarlas a sus capacidades y vulnerabilidades; a su evolución clínica; a su familia; a sus circunstancias irrepetibles y singulares. ser capaz de asegurar la individualización del cuidado1 es la competencia central a desarrollar en la formación nidcap. debido a ello, durante la pa, nuestra capacidad de mantener esa perspectiva de cambio y evolución que propugna la teoría sinactiva del desarrollo,3 se hace imprescindible y se pone en mayor evidencia. importa tener presente que, como todos sabemos, de esta teoría surge el modelo nidcap. por el hecho de ser un pilar básico del modelo que estudiamos, es necesario que el aprendiz haya comenzado a desarrollar esta competencia ya en etapas tempranas de su formación, anteriores a la pa. no obstante, la habilidad del aprendiz de individualizar las recomendaciones y propuestas de cuidado se hace visible con mayor claridad durante la pa. en consecuencia, el práctica avanzada de la formación nidcap: tesoros escondidos para aprendices y entrenadores dalia silberstein, phd, rn doi: 10.14434/do.v18i2.41642nidcap trainer, israel nidcap training center reflexionando sobre las observaciones durante la práctica avanzada 2025 • developmental observer • 13 requisito de contar con la capacidad de individualizar el cuidado emerge aún con mayor magnitud en esta fase de la formación. una situación que ejemplifica lo que señalo es la recomendación de cuidados "mantener el contacto físico cercano con su madre”. se trata de una recomendación presente en todas y cada una de las etapas que ha vivido el bebé desde su ingreso en la unidad. ha sido relevante y crucial para el bebé al que estamos siguiendo desde el mismo momento de nacer, y constituye una necesidad que está presente, sin excepción, en cada una de las etapas de su hospitalización.4 sin embargo, la manera de abordarla y actualizarla para el bebé y su familia es distinta en cada etapa de su desarrollo. hemos de anticipar que el abordaje de esa necesidad medular se transforme y evolucione en cada una de las observaciones que componen la pa. es, por tanto, de gran importancia que en dichas observaciones que el aprendiz formula y el entrenador evalúa seamos capaces de identificar y poner en evidencia esa singular evolución que presenta cada bebé, cada familia. así, ateniéndonos al ejemplo anterior, si se tratase de un bebé en su segundo día de vida que se encuentra fisiológicamente inestable y medicamente lábil, puede que la recomendación "universal" antes propuesta, tome la forma singular de: "considera guiar a los padres en el modo de ayudar a su bebé a mantener una posición relajada, posando suavemente sus manos alrededor de su cuerpo, de tal forma que los pies y los brazos del bebé estén levemente flexionados y cercanos al cuerpo”. en observaciones futuras hemos de formular claramente (el aprendiz) e identificar (el entrenador) como aquella necesidad incuestionable, constante e inamovible, de "mantener el contacto físico cercano con su madre”, adquiere distintos matices. tales matices son la manifestación inequívoca la de individualización. por ello, deben quedar reflejados en la pa en unas recomendaciones de cuidados individualizadas que varían en función de los cambios producidos en el bebé y sus circunstancias, por ejemplo: su situación clínica; su capacidad de estar alerta o de organizar su postura; la competencia de sus padres; etc. en definitiva, tal como he tratado de argumentar, la pa nos confronta, tanto a aprendices como a entrenadores, con el reto de la individualización. es en esta etapa del aprendizaje en el que con mayor claridad podemos poner de manifiesto nuestra capacidad de percibir el cuidado de manera individualizada. este es el primero de los tesoros escondidos de la pa: la oportunidad sin igual que esta vía de aprendizaje ofrece al aprendiz y al entrenador. al aprendiz le permite demostrar su competencia para individualizar sus apreciaciones y sugerencias. a su vez, le ofrece al entrenador la posibilidad de identificar y evaluar el grado en que dicha competencia está en uso durante el trabajo del aprendiz con él bebé y la familia. usos y desusos del lenguaje tal como he señalado, durante la pa se observa al bebé en el transcurso de varias semanas. esa suerte de "relato" a través del tiempo acerca del bebé en interacción con su entorno, con su familia, y con los cuidadores profesionales, proporciona un contexto en el que examinar nuestro lenguaje y reconocernos en él. el texto de las observaciones brinda una oportunidad más para identificar la medida en que logramos ser facilitadores del desarrollo. la pa posibilita una mirada amplia e integradora. es en esta etapa de la formación nidcap en la que podemos examinar de forma más completa nuestro discurso y el lenguaje que manejamos. abordaré esta percepción personal brevemente, con relación a tres ejes del cuidado que ya he mencionado: el bebé; los padres y los cuidadores profesionales. con relación al bebé, la pa nos sitúa en la necesidad de escoger con sensibilidad las palabras y expresiones que utilizamos para transmitir aquello que deseamos comunicar y enfatizar acerca del bebé y su desarrollo. por ello, nos insta a prestar atención a cuán cabalmente se refleja en el lenguaje que utilizamos nuestra percepción del bebé como un ser competente.5,6 en consecuencia, nos induce a explorar si hemos sido capaces de reflejar tanto sus fortalezas como sus vulnerabilidades. explorar el lenguaje que utilizamos en la pa supone, en definitiva, valorar en qué medida aquello que expresamos se adhiere al modelo de cuidados que propugnamos. con relación a los padres y cuidadores profesionales, las directrices del programa de formación1 nos instan a articular informes nidcap que: resulten claros y sostenedores para ellos; que les habiliten para comprender el lenguaje comportamental del bebé; que fomenten la creatividad y confianza de los padres y cuidadores para apoyar y promover el desarrollo del en definitiva, tal como he tratado de argumentar, la pa nos confronta, tanto a aprendices como a entrenadores, con el reto de la individualización. es en esta etapa del aprendizaje en el que con mayor claridad podemos poner de manifiesto nuestra capacidad de percibir el cuidado de manera individualizada. 14 • 2025 • developmental observer bebé. las directrices recomiendan, además, que aquello que comunicamos y escribimos impulse a los padres a sentir placer y seguridad en el ejercicio de su rol parental en el complejo entorno de la unidad neonatal.2 nada de lo anterior puede lograrse sin el uso reflexivo de nuestro propio lenguaje, tanto en los informes escritos que componen la pa, como en el diálogo que entablamos con padres e integrantes del equipo profesional de la unidad. el lenguaje que utilizamos puede contribuir al crecimiento profesional y a la transformación de la cultura de cuidados de la unidad. por todo ello planteo que, a la hora de valorar la pa, es conveniente responder a algunas cuestiones centrales en nuestro compromiso de apoyo al desarrollo del bebé. entre ellas destacan, a mi entender, las siguientes: ¿hemos sido capaces de transmitir fortalezas y vulnerabilidades inherentes al lenguaje comportamental del bebé? ¿hemos sido suficientemente hábiles al articular los próximos pasos en su trayectoria de desarrollo? ¿hemos hecho acopio de la sensibilidad y delicadeza necesarias para plantear unas recomendaciones de cuidados que contribuyan a su desarrollo? finalmente, cabe también preguntarse si hemos realizado el indispensable proceso de introspección que nos permite priorizar nuestro rol de guías y posibilitadores del cuidado7, como parte integral de nuestra identidad profesional. aquí yace, entonces, un segundo tesoro escondido de la pa: el lenguaje utilizado al escribir las observaciones y comunicarlas, ofrece una ventana desde la cual apreciar las percepciones más genuinas y profundas que tenemos del cuidado que brindamos al bebé y su familia en el marco del modelo nidcap. construir el diálogo aprendices y entrenadores incorporan al proceso de formación nidcap sus propias percepciones y perspectivas del cuidado. como entrenadores nos enfrentamos al reto de ser cálidos, sensibles y respetuosos, de identificar y comprender las percepciones de nuestros alumnos y hacer explícitas al mismo tiempo las nuestras, sin imponerlas y sin asumir que se dan por sentadas. una cuestión que me he preguntado desde mi rol como entrenadora nidcap es la siguiente: ¿cómo puede iniciarse, promoverse y mantenerse vivo un diálogo que es necesario y vital, en una formación que por lo menos en parte, se lleva a cabo a distancia? en mi caso, he utilizado el recurso de notas escritas intercaladas en el texto del aprendiz. he utilizado dichas notas como una primera y muy básica plataforma desde la cual construir una base para el dialogo que se establecerá después, a través de conversaciones en persona u online. estas notas me han proporcionado un modesto cimiento desde el cual propiciar un diálogo reflexivo, abierto, y esclarecedor entre aprendiz y entrenador. he aprendido, a su vez, que algunos aprendices pueden estar poco familiarizados con este "método" y que, acaso, puedan sentir cierta incomodidad al recibir un trabajo que incluye numerosas notas. viniendo de sistemas educativos más o menos tradicionales, muchos hemos sido educados en la premisa que cuanto más impecable y con menos notas se nos devuelve un trabajo, mejor. un trabajo que contiene muchas notas del profesor o mentor es – según dicha concepción – un trabajo menos logrado. sin embargo, desde mi experiencia, las notas son vitales para propiciar la reflexión y el diálogo, y es por ello que procuro incluirlas. no hacerlo significaría, desde mi punto de vista, renunciar a un intercambio más abierto de ideas sobre lo observado acerca del bebé y su familia. a menudo he sentido la necesidad de explicar este punto de vista, y asegurar al aprendiz que estas notas son un elemento ineludible en la construcción de un dialogo más libre, que dará lugar a un más profundo aprendizaje. sin el intercambio y la mutua exposición de puntos de vista, el proceso de aprendizaje se empobrece. desde mi perspectiva, es en esas notas del entrenador en las que radica otro tesoro escondido en la pa: el uso de un instrumento sencillo como plataforma desde la cual propiciar el diálogo. enhebrar reflexiones la práctica del modelo nidcap consiste en observar, articular lo que hemos observado y reflexionar acerca de ello. las observaciones secuenciales de la pa nos permiten mirar de manera estructurada e individualizada el comportamiento del bebé y sus necesidades de desarrollo a lo largo del tiempo. es la lectura de dichas observaciones la que permite al entrenador valorar lo que el aprendiz ha observado e inferido. sin embargo, son las reflexiones escritas que se adjuntan a cada una de las observaciones de la pa las que otorgan al entrenador un atisbo de lo que el aprendiz ha sentido y experimentado. la reflexión, sustentada en los apartados que aporta la denominada "journal page"8 de la formación nidcap, proporciona una ventana única al mundo interior del cuidador, en este caso el aprendiz. la oportunidad de reflexionar que nos otorga la pa pone a prueba nuestra capacidad de pensar más libremente, de quitar desde mi perspectiva, es en esas notas del entrenador en las que radica otro tesoro escondido en la pa: el uso de un instrumento sencillo como plataforma desde la cual propiciar el diálogo. 2025 • developmental observer • 15 vallas a nuestra mente y plasmar con espontaneidad aquellos pensamientos que la observación ha despertado en nosotros. puede que, en esa implícita invitación de la pa a la libre reflexión, radique su aparente complejidad. no es inusual que los aprendices manifiesten una cierta "dificultad para reflexionar". de hecho, a menudo han preguntado qué tipo de pensamientos sería pertinente incluir en esa sección de la pa. son la necesidad y el deseo de mirar una situación aparentemente conocida desde nuevas perspectivas, los que desencadenan la exigencia de reflexionar sobre la práctica profesional. hacerlo requiere cierta dosis de introspección, sensibilidad y tolerancia. por sobre todas las cosas, reflexionar significa estar en disposición de hacer una pausa, de frenar. quizás en cada uno de estos atributos radica la dificultad de ejercitar la reflexión que se manifiesta, a veces, durante el proceso de formación. sin embargo, el imperativo de reflexionar que exige la formación nidcap es más sencillo de lo que pueda parecer a primera vista, si se aborda con genuina libertad. mi consejo es aproximarnos al ejercicio de la reflexión con la mente – y sobre todo el corazón – abiertos. permitirnos la libertad de considerar todo aquello que nos viene en mente a partir de la observación que hemos hecho. que no impongamos límites estrictos, ni atendamos a un determinado método o estructura al hacerlo. que hagamos un pequeño inventario de los pensamientos y sentimientos que cada observación ha despertado en nosotros. llegados a este punto, que escojamos en cuál de ellos nos gustaría detenernos a reflexionar por escrito. bastaría, desde mi punto de vista, con que el aprendiz aborde cada vez uno o dos "temas" de su inventario. así, cada observación y su correspondiente reflexión nos obsequiarían seguramente con el tesoro escondido de descubrir un nuevo matiz, una nueva faceta en nuestro aprendiz. es así como al leer la pa, las reflexiones del aprendiz que acompañan las distintas observaciones se enhebran a través de nuestra lectura en una suerte de collar imaginario. las reflexiones nos proporcionan una herramienta más para para apreciar las diversas maneras en las que el aprendiz percibe al bebé, su trayectoria de desarrollo y las interacciones de cuidados que experimenta. cultivar el orgullo uno de los principales objetivos de la pa es que el aprendiz aprenda a apoyar al bebé y su familia, así como al equipo profesional que colabora con ellos, para ayudarles a sentirse más competentes para cuidar a su bebé y favorecer su desarrollo.1 en mi práctica como enfermera desde la perspectiva del modelo nidcap, he identificado que una de las maneras más apreciadas y eficaces para brindar ese tipo de apoyo es cultivando el sentido del orgullo, tanto en los padres como en los profesionales. son muchos los motivos para sentir orgullo y satisfacción en el día a día de una unidad neonatal. por ejemplo: por los cuidados que se brindan; por la capacidad de individualizar las decisiones; por mantener el foco asistencial en el bebé y su familia; por las incipientes capacidades que día a día va mostrando el bebé, a pesar de la fragilidad de su prematuridad o de las complejidades médicas que pueda presentar. la pa, con su metódico seguimiento del bebé a lo largo de varias semanas, nos permite situar ese orgullo en un primer plano, nos ofrece un ámbito en el que regocijarnos (tanto padres como profesionales) en los logros del bebé. la pa nos invita a enfatizar la alegría de formar parte del esfuerzo conjunto de ayudar a ese bebé y su familia a expresar su más óptimo potencial de desarrollo. en el complejo entorno de la ucin, donde lo urgente puede a menudo quitar lugar a lo importante, la pa nos obsequia con otro pequeño tesoro: un contexto donde detenernos, destacar y cultivar la alegría y el orgullo por el bebé que cuidamos. conclusión la pa de la formación nidcap proporciona una experiencia llena de oportunidades de aprendizaje tanto para aprendices como para entrenadores. adquirir mejor competencia y habilidad para individualizar, utilizar más adecuadamente el lenguaje, reflexionar, fomentar el diálogo y cultivar el orgullo son desde mi perspectiva algunas de las más destacadas. no obstante, las nociones y competencias que afianzamos en esta etapa de la formación no se limitan exclusivamente al ámbito de la pa, sino que, de hecho, la trascienden. si somos capaces de proyectar más allá esas nociones y competencias, podremos ejercitarlas e implementarlas en otros contextos de nuestro ejercicio profesional. de esta manera, beneficiaremos y enriqueceremos cada una de las interacciones de cuidados en las que participemos, y cada una de las experiencias de aprendizaje que propiciemos. en este sentido, la pa encierra la potencialidad de convertirnos no solamente en profesionales nidcap, sino también en mejores cuidadores en el marco del equipo multidisciplinar de cuidados de la unidad neonatal. agradecimientos agradezco de corazón a maría maestro y josep perapoch, de la federación internacional nidcap, por aportarme sus valiosas reflexiones, incorporadas a este manuscrito. y a consuelo lópez, de la universidad de cádiz, por revisar este trabajo y sugerir importantes mejoras al texto. bibliografía 1. als h. program guide. newborn individualized developmental care and assessment program (nidcap): an education and training program for health care professionals. copyright, nidcap federation international, 1986, rev 2009. 2. als, h. guidelines for advanced nidcap practicum: following an infant and family from admission to discharge and transition to the home. copyright nidcap federation international, 2010. 3. als h. toward a synactive theory of development: promise for the assessment and support of infant individuality. infant ment health j. 1982; 3(4):229–43. doi: co;2-h 10.1002/10970355(198224)3:43.0. 4. flacking r, lehtonen l, thomson g, axelin a, ahlqvist s, moran v et al. closeness and separation in neonatal intensive care. acta paediatrica, 2012; 101, 1032–1037. 5. brazelton tb. preface. pediatrics, 2005;113, 632-633. 6. tronick e. the neurobehavioral and social-emotional development of infants and children. 2007; w. w. norton & company. new york. london. 7. als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology, 1997; 21 (3):178-189. 8. als h. documentation of nidcap observations: journal page. copyright nidcap federation international, 2018. 16 • 2025 • developmental observer m y perception of training within the nidcap model framework is that of a gradual and increasing approximation to the needs of the infant and their family, as well as a deeper understanding of the professional team's impact on their care. this idiosyncrasy gradual and increasing is essential in a training process aiming to understand and care for the infant's individuality. nidcap training consists of several phases.1 once the professional in training (hereafter, "trainee") has demonstrated an appropriate conceptualization of the infant's behaviour and can formulate appropriate observations and care recommendations, the next phase in training is the advanced practicum (hereafter, "ap"). the ap consists of periodic observations, following the learned methodology, of the infant and family, from admission to the neonatal intensive care unit (nicu) until hospital discharge and transition home.2 the ap is an important turning point in the training process and a unique component. both trainees and trainers come to the ap with a good deal of excitement and expectation, and perhaps holding various questions in mind: will we be able to create a genuine relationship of support and collaboration with the family? how will it evolve? what will be its nuances as the weeks go by? how will we express, both in writing and through actions and deeds, our commitment to the care of the infant and family, and to the training process itself? will we be able to build and ensure the supportive envelope needed for the baby, the parents, the trainee, and the nicu professionals that the nidcap model3 advocates for? these questions invite us to reflect on those less apparent or explicit opportunities, yet to be revealed, that this phase of training offers to both trainees and trainers. if we come with curiosity, with open minds and hearts, what "hidden treasures" can we discover in our experience with ap? in this article, i would like to discuss some of those i have discovered in my own training experiences. a call for individuality the ap spans several weeks. it begins in the first days after birth, continues through hospitalization and discharge, and ends in the home environment. throughout this time, longitudinal and regular follow-up of the infant through nidcap observations provides us with a better understanding of their needs; it engages us in a new way in promoting their ongoing evolution and development. the ap tests our ability to adopt, develop, and maintain an individualized approach to care over time. this stage of training calls upon us to further adjust and refine that capacity, which we have been developing in earlier stages of nidcap training. it prompts us to refine our analysis further and to articulate our recommendations for this unique infant we are following. it places us in the need to tailor those recommendations to the infant's strengths and vulnerabilities, their clinical evolution, their family, and their circumstances. the core competence to be developed in nidcap training is the ability to ensure the individualization of care.1 because of this, during ap, our ability to maintain the perspective of change and evolution advocated by the synactive theory of development3 becomes essential and more evident. it is important to remember that the nidcap model stems from this theory. since it is a fundamental pillar of the model we are studying, the trainee must have begun to develop this competence in the early stages of their training, prior to the ap. however, the trainee's ability to individualize care recommendations becomes more visible during the ap. consequently, the requirement to individualize care emerges even more strongly at this stage of training. a situation to exemplify this is the care recommendation "maintain close physical contact with mother". this recommendation is appropriate for every stage of the infant's life. it has been relevant and crucial from the very moment of birth, and constitutes a need that is present, without exception, at every phase of the infant's hospitalization.4 however, the way of addressing and updating it for the infant and family differs at the advanced practicum in nidcap training: hidden treasures for trainees and trainers dalia silberstein, phd, rn doi: 10.14434/do.v18i2.41643nidcap trainer, israel nidcap training center finding new ways to build a dialogue 2025 • developmental observer • 17 each developmental stage. we must anticipate that our approach to this core developmental need will change and evolve in each of the observations that make up the ap. it is therefore very important that in these nidcap observations, which the trainee formulates and the trainer evaluates, we can identify and highlight the unique evolution of each infant and family. thus, following the previous example, if it was a physiologically unstable and medically labile two-day old infant, the previously proposed "universal" recommendation above might take the singular form of: "consider guiding j's parents on how to help her maintain a relaxed position by gently placing their hands around her, so that j's feet and arms are slightly bent and close to her body." in future observations we need to clearly formulate (the trainee) and identify (the trainer) how that unquestionable, constant and immovable need "to maintain close physical contact with his mother" takes on different nuances. such nuances are the unmistakable manifestation of individualization. therefore, they should become apparent in the ap as individualized care recommendations that vary according to changes in the infant's circumstances, e.g., their clinical situation; their ability to be alert or organize their posture; the parents' competence, etc. in short, as i have tried to articulate, the ap confronts both trainees and trainers with the challenge of individualization. it is at this stage of the training process that we can most clearly demonstrate our ability to perceive care in an individualized way. this is the first of the ap's hidden treasures: the unparalleled opportunity that this learning path offers to the trainee and the trainer. it allows trainees to demonstrate their competence in individualizing their assessments and suggestions. in turn, it allows the trainer to identify and evaluate the degree to which this competence is in use during the trainee's work with the infant and family. uses and misuses of language as previously pointed out, during the ap, the infant is observed over the course of several weeks. this kind of "narration" over time about the infant in interaction with their environment, their family, and the professional caregivers, provides a context in which to examine our language and to recognize ourselves in it. the written text of the observations provides a further opportunity to identify the extent to which we succeed in being facilitators of development. the ap enables us to take a broad and integrative view. at this stage of nidcap training, we can more fully examine our discourse and language. i will briefly address this personal perception in relation to three components of care that have already been mentioned: the baby, the parents, and the professional caregivers. regarding the infant, the ap places us in a position where we must choose carefully the words and expressions to use in our communications (reports) about their de velopment. it therefore prompts us to pay attention to how fully our perception of the infant as a competent being is reflected in the language we use.5,6 consequently, it leads us to explore whether we have been able to reflect about their strengths and vulnerabilities. exploring the language we use in ap, ultimately means assessing the extent to which it reflects the nidcap model of care. regarding the parents and professional caregivers, the training program guidelines1 encourage us to articulate nidcap reports that are clear and supportive for them; that enable their understanding of the infant's behavioural language; and that foster their creativity and confidence to support and promote infant's development. the guidelines further recommend that what we communicate and write does encourage parents to feel pleasure and confidence in their parental role in the complex environment of the neonatal unit.2 none of the above can be achieved without the thoughtful use of our own language, both in written reports (which make up the ap) and in the dialogue we engage in with parents and members of the professional team. the language we use can, in turn, contribute to professional growth and to the transformation of the unit's culture of care. therefore, i suggest that when evaluating the ap, it might be helpful to answer some questions central to our commitment to support infant's development. among them, the following stand out: have we been able to convey the strengths and vulnerabilities inherent in the infant's behavioural language? have we been sufficiently skillful in articulating the next steps in the infant's developmental trajectory? have we mustered the necessary sensitivity and delicacy to suggest care recommendations that contribute to the infant's development? finally, it is also worth asking in short, as i have tried to argue, the ap confronts both trainees and trainers with the challenge of individualization. it is at this stage of the training process that we can most clearly demonstrate our ability to perceive care in an individualized way. 18 • 2025 • developmental observer whether we have undertaken the necessary process of introspection that allows us to prioritize our role as guides and facilitators of care7 as an integral part of our professional identity. here, then, lies a second hidden treasure of the ap: the language used in writing down observations and communicating them offers a window from which to appreciate the deeper and more genuine insights we have into the care we provide to the infant and family within the nidcap model. building a dialogue trainees and trainers bring their own perceptions and perspectives of care into the nidcap training process. as trainers, we face the challenge of being warm, sensitive and respectful, to identify and understand our trainees' perceptions and at the same time make our own perceptions explicit, without imposing them or assuming that they are taken for granted. a question i have asked myself in my role as nidcap trainer is the following: how can a dialogue that is necessary and vital, be initiated, promoted and kept alive in a training that is partly carried out remotely? in my case, i have used the resource of written margin notes inserted in the trainee's text. i have used these notes as a first and very basic platform from which to build a basis for a dialogue that will be established later, through conversations in person or remotely. these notes have provided me with a modest foundation from which to foster a reflective, open, and enlightening dialogue between trainees and me. i have learned, in turn, that some trainees may be unfamiliar with this "method" and may feel some discomfort at receiving a paper that includes numerous notes. coming from traditional educational systems, many of us have been brought up on the premise that the more flawless and less marked a paper is returned to us, the better. a paper that contains a lot of remarks from the teacher or mentor is, according to that conception, a less successful one. however, in my experience, notes are vital to encourage reflection and dialogue, which is why i try to include them. not to do so would mean, in my view, giving up to a more open exchange of ideas about what has been observed about the baby and family. i have often felt the need to explain this point of view, and to reassure the trainee that these notes are an inherent element in the construction of a freer dialogue, which will lead to deeper learning. without the mutual exchange of perspectives, the learning process is impoverished. from my perspective, it is in these trainer's margin notes that lies another hidden treasure in the ap: the use of a simple instrument as a platform from which to foster dialogue. threading reflections the practice of nidcap consists of observing, articulating what we have observed and reflecting on it. the sequential observations of the ap allow us to look in a structured and individualized way at the infant's behaviour and developmental needs over time. it is reading these observations that allows the trainer to assess what the trainee has observed and inferred. however, it is the written reflections attached to each of the ap observations that give the trainer a glimpse of what the trainee has felt and experienced. reflection, supported by the topics provided in the "journal page",8 provides a unique window into the inner world of the caregiver, in this case the trainee. the opportunity to reflect what the ap affords, tests our ability to think more freely, to remove boundaries from our minds and spontaneously express those thoughts that the observation provoked. perhaps it is in this implicit invitation to freely reflect that its apparent complexity lies. it is not unusual for trainees to express a certain "difficulty to reflect". indeed, they have often asked what sort of thoughts would be pertinent to this section of the ap. it is the need and desire to look at a seemingly familiar situation from new perspectives that triggers the demand to reflect on professional practice. doing so requires a certain amount of introspection, sensitivity and tolerance. above all, to reflect means to be willing to pause, to slow down. perhaps in each of these attributes lies the difficulty of exercising reflection that sometimes manifests itself during the training process. however, if approached with genuine freedom, reflection, an essential component of nidcap training, is simpler than it may seem at first glance. my advice would be to approach reflection with an open mind and especially with an open heart. to allow ourselves the freedom to consider whatever comes to mind from the observation we have made. that we do not impose strict limits, nor do we necessarily adhere to a certain method or structure in doing so. let us make a small "inventory" of the thoughts and feelings that each observation has awakened in us. at this point, let us choose which of them from my perspective, it is in these trainer's margin notes that lies another hidden treasure in the ap: the use of a simple instrument as a platform from which to foster dialogue. 2025 • developmental observer • 19 we would like to pause and reflect on in our writing. it would suffice, in my view, for trainees to address one or two "themes" from their "inventory" in each observation. in so doing, each observation and its corresponding reflection would surely present us with the hidden treasure of discovering a new nuance, a new facet in our trainee. thus, as we read the ap, the trainee's reflections on each observation get threaded through our reading in a kind of imaginary necklace. these reflections provide us with another tool to appreciate the various ways in which the trainee perceives the infant, their developmental trajectory and the care interactions they experience. cultivating pride one of the main goals of the ap is that the trainee learns to support the baby and family, as well as the professional team that collaborates with them, to help them feel more competent in caring for their baby and to promote their development.1 as a nurse practicing from the nidcap model perspective, i have identified that one of the most valued and effective ways to provide such support is to cultivate a sense of pride in both parents and professionals. there are many reasons to feel pride and satisfaction in the day-to-day life of a neonatal unit. for example: for the care provided; for the ability to individualize decisions; for keeping the focus of care on the infant and family; for the emerging abilities that the infant is showing day by day, despite the fragility of prematurity or the medical complexities they may present. the ap, with its methodical follow-up of the infant over several weeks, allows us to bring that pride to the forefront, and offers us (both parents and professionals) an arena in which to rejoice in the infant's achievements. the ap invites us to showcase the joy of being part of the joint effort to help that infant and their family express their most optimal developmental potential. in the complex environment of the nicu, where urgency can often take the place of important experiences, the ap presents us with another small treasure: a context in which to pause, to highlight and cultivate joy and pride in the infant we care for. conclusion the ap of nidcap training provides an experience full of learning opportunities for both trainees and trainers. acquiring better competence and ability to individualize care, using language more appropriately, reflecting, fostering dialogue and cultivating pride are from my perspective some of the most salient ones. however, the concepts and competences that we develop at this stage of nidcap training are not limited exclusively to the ap, but in fact transcend it. if we extend these concepts and competences further, we will be able to exercise and implement them in additional contexts of our professional practice. in this way, we will benefit and enrich each of the care interactions in which we take part, and each of the learning experiences that we facilitate. in this sense, the ap holds great potential to turn us not only into nidcap professionals, but also into better caregivers within the multidisciplinary care team of the neonatal unit and elsewhere. acknowledgement i sincerely thank maría maestro and josep perapoch from the nidcap federation international for providing me with their valuable reflections, which i incorporated into this manuscript. i also thank consuelo lópez from the university of cádiz for reviewing this work and suggesting important improvements to the text. references 1. als h. program guide. newborn individualized developmental care and assessment program (nidcap): an education and training program for health care professionals. copyright, nidcap federation international, 1986, rev 2009. 2. als, h. guidelines for advanced nidcap practicum: following an infant and family from admission to discharge and transition to the home. copyright nidcap federation international, 2010. 3. als h. toward a synactive theory of development: promise for the assessment and support of infant individuality. infant ment health j. 1982; 3(4):229-43. doi: co;2-h 10.1002/10970355(198224)3:43.0. 4. flacking r, lehtonen l, thomson g, axelin a, ahlqvist s, moran v et al. closeness and separation in neonatal intensive care. acta paediatrica, 2012; 101, 1032-1037. 5. brazelton tb. preface. pediatrics, 2005;113, 632-633. 6. tronick e. the neurobehavioral and social-emotional development of infants and children. 2007; w. w. norton & company. new york. london. 7. als h & gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology, 1997; 21 (3):178-189. 8. als h. documentation of nidcap observations: journal page. copyright nidcap federation international, 2018. one of the main goals of the ap is that the trainee learns to support the baby and family, as well as the professional team that collaborates with them, to help them feel more competent in caring for their baby and to promote their development. 20 • 2025 • developmental observer d elirium is recognized as a serious condition associated with hospital stays, especially in intensive care units (icus) and geriatric settings. delirium is codified in the american psychiatric association’s diagnostic and statistical manual (dsm-5)1 and in the world health organization’s international classification of diseases, tenth edition (icd-10). the dsm-5 classifies delirium as a disorder of neurocognition. symptoms are manifest as acute disturbance in attention, perception, awareness, and changes in cognition, indicating disorganization of thought, such as disorientation, alteration in language, and memory impairment. other supportive features may be hallucinations or misperceptions, delusions, inappropriate or unsafe behavior, and lability in arousal and emotions, both of which may include hypoactive and hyperactive forms. by definition, delirium is a syndrome of cns dysfunction seen as a consequence of another prior medical condition.2 examples of such prior, physiologic causes may be from a toxin, disease, injury, medication or other iatrogenic factors. what we “see” is the result of these provocative conditions or events. the “seen” symptoms can be charted explicitly, using validated tools such as the confusion assessment method for the icu and the intensive care delirium screen checklist,3,4,5 which are considered easy, rapid screens. these symptom descriptions convey the seriousness of delirium. delirium diagnoses in adult icu patients predict longer hospitalizations and subsequent increases in morbidity and mortality. consequently, the syndrome has become a call for treatment plans and clinical trials for prevention and mitigation. additionally, with reports of as many as 30 – 80% of patients experiencing hospital delirium (especially in icus), investigators have widened their investigations to examine different populations and age groups.2, 6 delirium is now reported in pediatric patients, and questions of treatment approaches, including pharmacological interventions are being tested.5,6,7 the foregoing summary brings us to the question introduced in the title of this essay: does delirium arise in the nicu? there is urgency in this question because delirium is a syndrome that creates suffering and, importantly, regularly leads to additional morbidities and even to mortality. furthermore, delirium is associated with icu conditions and procedures, many of which prevail in the nicu! (admission to an icu or nicu often means separation and isolation; the restraints and stresses of mechanical ventilation are frequently cited as potential iatrogenic precursors, as are the after-effects of some sedatives, etc.).7-10 there is general acceptance that delirium can be discerned validly and reliably in medical and surgical wards, postoperative recovery areas, emergency departments as well as the icus and step-down units. it is reported in geriatric, adult, and pediatric populations. my survey of published reports of delirium in the nicu yielded a small number of case reports.11,12 here, i will bring to the discussion some perspectives and considerations from the field of “developmental science”. though it is not a clinical specialty, i have found that this field has ideas to share with neonatology that are sometimes helpful f r o m t h e s c i e n c e d e s k doi: 10.14434/do.v18i2.41638 delirium in the nicu: seeing is believing or believing is seeing? jeffrey r. alberts, phd indiana university, usa, nfi science committee, associate editor for science maternal and infant gaze im ag e by e m an ue l a ng el ic as 2025 • developmental observer • 21 f r o m t h e s c i e n c e d e s k in pragmatic ways and often make useful contributions by stimulating fresh approaches and considerations. let’s give it a try. we’ll address two views which can be considered “opposing” perspectives. admittedly, this is a simplification because each view is contained in the other. nevertheless, for starters, let’s go with the two “opposing” statements: seeing is believing and then believing is seeing, because an initial separation will help clarify the issues. i emphasize that i am proceeding with caution and respect because i do not have direct professional experience with hospital delirium. the thoughts that i share here are reactions to the published literature, combined with decades of lab-based experience as a “developmental psychobiologist” working with perinatal animals (rats and mice). additionally, i am a proud nidcap professional, with approximately 10 years of experience in this specialty within nicus. seeing is believing as officially codified in the dsm-5 and by other respected professional groups, delirium is defined as a syndrome of cns dysfunction. it is understood as a neurocognitive disorder. what does “neuro” “cognitive” mean in this context? the “neuro” component refers to brain function (dysfunction or encephalopathy in the present discussion). thus, we consider brain systems as the substrate responsible for the behavioral changes that are manifested. the “cognitive” component refers to some of the non-behavioral changes that contribute to the symptoms. these are changes in thinking, some emotions, perceptions, attention, focus, awareness, and orientation to people and things. cognitions themselves cannot be seen: they are inferred and interpreted. cognitions are usually ascribed to “higher” functions of the mind and brain. as such, cognitive processes are localized in “higher” regions of the brain, particularly the cerebral cortex. top of the list: frontal lobes for “executive functions” such as attention, emotional control, decision making; broca’s area, in the left frontal gyrus, controlling speech production and word usage; wernicke’s area, left posterior superior temporal gyrus, understanding meaning of words and sentences, and so on across the cortex where spatial regions cover the interpretation of sensory information as well as many aspects of movements. together, these areas comprise the core cognitive processes. by observing and questioning a patient, healthcare specialists gather information to assess the status of mental function. of the various non-verbal indices of cognition, eye movements are particularly important. much is known about the functional organization of the visual system, especially the neural controls and cognitive mediators of eye movements. together, these “neuro” and “cognitive” features provide much of the behavioral and inferred cognitive functions that are interpreted in the standard screening tools for diagnosing delirium in hospital settings. eye movements that do not fix on faces during interactions suggest social disconnection, eyes that do not track moving objects thus communicate lack of attention or signal disorientation from the present. as a result, seeing is believing in the recognition of delirium. the same measures guide choices of pharmacological treatments aimed at treating delirium symptoms. perhaps not surprisingly, antipsychotic drugs and, more recently, the so-called “atypical” antipsychotic drugs have been the pharmacological treatments of choice for delirium.9 believing is seeing with a goal of identifying and capturing previously unrecognized cases of delirium, a widening evaluative net is being cast across a variety of hospital units. consequently, delirium has been discerned in medical and surgical wards, postoperative recovery areas, emergency departments, step-down units, as well as pediatric icus.7 predictably, this net now includes nicus. at this point, published accounts of delirium in the nicu are limited to a small number of case reports, but the search is underway for the syndrome in nicu populations.2, 9-12 certainly, any syndrome in the nicu that increases morbidities or is developmentally damaging should be identified. but there are reasons to question whether delirium, per se, is a valid diagnosis for newborns, especially those born preterm and who depend on newborn intensive care for weeks or months before reaching 40 weeks (postmenstrual age). there is value in accuracy and in avoiding labelling that can misguide interpretation or deflect focus. this is where developmental science can contribute. a primary concern is that the current definitions, diagnostic criteria, and tools for defining delirium are based on adult cognition and behavior. a cognitive framework was initially constructed and refined around a syndrome of behavioral with a goal of identifying and capturing previously unrecognized cases of delirium, a widening evaluative net is being cast across a variety of hospital units. 22 • 2025 • developmental observer f r o m t h e s c i e n c e d e s k phenomena we call delirium. this cognitive framework was then linked—by inference, not by direct data—to brain dysfunction (“encephalopathy” was an early label), and we have delirium as a neurocognitive disorder! it is said to manifest in pediatric units as with adults in icus and elsewhere, and emblematically with geriatric patients. i hasten to add that the cornell assessment for pediatric delirium (capd), a standardized instrument14 is used, as are other bedside screens. the capd is an instrument designed within a cognitive framework. it represents a tacit belief that there are higher-level cognitive processes normally at work in the infant and that these can be provoked into dysfunction. with this belief framework in place, believing can lead to seeing. but is this real, or a kind of illusory ‘sleight of hand’ trick that we can play on ourselves? it can be satisfying to see instances of direct continuity from the immature, unformed infant to the mature, differentiated, and integrated adult. but does such “developmental continuity” exist between the diagnosed delirium of children with that of adolescents, adults, and geriatric patients who share a terminologic diagnosis? accurate, in-depth answers to this question are important because continuities in the disorder would enable tests of common treatments, whereas lack of continuities would immediately challenge the use of common treatments and, importantly, motivate further studies of the syndrome in the infant, adult, and intermediate stages. conveniently, the “neuro” side of neurocognition can contribute to this discussion of delirium. gaze is a great example. gaze refers to the movements that orient the eyes to a target and fix on it. gaze has long been used in cleverly designed experiments to reveal infant abilities to detect, discriminate between, and recognize visual stimuli – all perceptual tasks. but there has been a major shift: the same eye movements are now interpreted as cognitive processes. this has worked pretty well with adult subjects. in delirium, patients often fail to fixate on faces, and their eyes do not track novel objects. they fail to pay attention to people, speech, and their surroundings. their words and thoughts become similarly disorganized. in adults and children with speech, this spectrum of deficient attention, loss of social connections, and failures of ‘executive function’ are linked to dysfunction of the cerebral cortex. we have long known that the cortex is a late-developing structure, displaying multiple forms of immaturity in babies and toddlers and continuing to develop and undergo refinement as long as 20 years in humans! what we have not appreciated until recently is that the cortical control of eye movements and gaze is absent in infants! yes, the infant’s eyes move and can move in a coordinated, functional manner, but the cortex is not yet involved! instead, it is an alternate, so-called “reflexive” pathway from the eyes and optic nerve directly to the midbrain visual structures, such as the superior colliculus, and directly back to the eye muscles that make the movements. so babies can visually track, fixate, and soon establish and maintain preferential eye contact with parents – but this is accomplished without cortical participation. and remember: we ascribe cognition to the cortex. thus, gaze in infants does not ‘mean’ the same thing as it does in adults because infants lack the critical “cortical outflow”. this, i must note, is a part of the message contained in the important publication by blumberg and adolph16 that was discussed in a previous issue of the developmental observer.17 these concerns have important implications for the diagnosis of delirium in the nicu. gaze by infants can be used appropriately and rigorously for perceptual tests such as detection, discrimination, recognition, or acuity. in contrast, delirium is defined primarily in terms of cognitive function and dysfunction. if we adhere to the established, conventional standard that the late-developing cerebral cortex is the neural seat of cognitive processes, then it is not appropriate to use measures of gaze as an index of cognition in infants, and certainly not for the preterm babies that populate the nicu! in fact, delirium, as it is currently defined, is not an accessible condition, not with the normal scientific standards that are appropriate for applying interventions based on cognitive symptoms! what should be done? my view—as an initial contribution to a needed dialogue—is that it is vital to have tools to recognize dysfunction in newborns and infants, but the tools, the interventions, and the measures of treatment outcome must be valid, precise, and accurate. cognitive measures for adults and infants are not comparable. for babies at preterm and corrected infant ages, observational metrics based on synactive theory, i.e., autonomic, state, behavior, coupled with systematic evaluations that incorporate normal and necessary procedures, during routine bedside care, examinations, bathing, feeds, and kangaroo care for example – are sources of valuable gaze has long been used in cleverly designed experiments to reveal infant abilities to detect, discriminate between, and recognize visual stimuli— all perceptual tasks. 2025 • developmental observer • 23 f r o m t h e s c i e n c e d e s k data. in other words, nidcap observations18 (or similar tools from other, related forms of developmental care) offer valid and valuable data for assessments. it is inappropriate, i would argue, to apply to infants batteries of highly interpretive and neurologically counter-indicated methods derived from and developed for adult patients. words such “disorganized” are more precise and accurate than “delirious”, especially when organization/disorganization are described and scored rigorously. methods such as nidcap observations are available, accurate, and preferable. references 1. american psychiatric association. (2013) diagnostic and statistical manual of mental disorders, 5th edn (dsm-5), american psychiatric association publishing 2. liviskie, c. & mcpherson, c. (2021) delirium in the nicu: risk or reality? neonatal network, 40(2) http://dx.doi.org/10.1891/0730-0832/11-t-727 3. bergeron n, dubois mj, dumont m, dial s, skrobik y. (2001) intensive care delirium screening checklist: evaluation of a new screening tool. intensive care med. may;27(5):85964. doi: 10.1007/s001340100909. pmid: 11430542.. 4. inouye, s. k., leo-summers, l., zhang, y., bogardus, s. t., leslie, d. l., & agostini, j. v. (2005). a chart-based method for identification of delirium: validation compared with interviewer ratings using the confusion assessment method: chart identification of delirium. journal of the american geriatrics society, 53(2), 312–318. https://doi. org/10.1111/j.1532-5415. 2005.53120. 5. maldonado jr. (2008) pathoetiological model of delirium: a comprehensive understanding of the neurobiology of delirium and an evidence-based approach to prevention and treatment. crit care clin. oct;24(4):789-856, ix. doi: 10.1016/j.ccc.2008.06.004. pmid: 18929943. 6. ely ew, inouye sk, bernard gr, gordon s, francis j, may l, truman b, speroff t, gautam s, margolin r, hart rp, dittus r. (2001) delirium in mechanically ventilated patients: validity and reliability of the confusion assessment method for the intensive care unit (cam-icu). jama. dec 5;286(21):2703-10. doi: 10.1001/jama.286.21.2703. pmid: 11730446. 7. mart mf, pun bt, pandharipande p, jackson jc, ely ew. (2021) icu survivorship-the relationship of delirium, sedation, dementia, and acquired weakness. crit care med. aug 1;49(8):1227-1240. doi: 10.1097/ccm.0000000000005125. pmid: 34115639; pmcid: pmc8282752. 8. wilson, j.e., et al., ely, e.w. (2020) delirium, nature reviews/ disease primers, 6:90, https://doi.org/10.1038/ s41572-020-00223-4 9. adams, s.j. & sprecher, a. (2022) delirium in the neonate, clinical perinatology, 49: 1-14. https://doi.org/10.1016/j.clp.2021.11.001 10. wilson, j.e., et al., ely, e.w. (2020) delirium, nature reviews/ disease primers, 6:90, https://doi.org/10.1038/ s41572-020-00223-4 11. edwards le, hutchison lb, hornik cd, smith pb, cotten cm, bidegain m. a case of infant delirium in the neonatal intensive care unit. (2017) j neonatal perinatal med. 10(1):119-123. https://doi.org/10.3233/npm-1637 12. groves a, traube c, silver g. (2016) detection and management of delirium in the neonatal unit: a case series. pediatrics.137(3):e20153369. https://doi.org/10.1542/peds.20153369 13. holberg, m.y., larsen, m.h. mariussen, k.l. & kyna, n.m. (2021) delirium in children under two years of age admitted to intensive care units – a systematic review. sykepeien forskning, 16 (85808) (e85808) doi: 10.4220/sykepleienf.2021.85808en 14. silver, g., kearney, j., traube, c., & hertzig, m. (2015) delirium screening anchored in child development: the cornell assessment for pediatric delirium, palliative and supportive care, 13(4): 1005-1011. doi:10.1017/s1478951514000947 15. porter s, holly c, echevarria m. (2016) infants with delirium: a primer on prevention, recognition, and management. pediatr nurs. sep-oct;42(5):223-9. pmid: 29406640.. 16. blumberg, m.s. & adolph, k.e. (2023) protracted development of motor cortex constrains rich interpretations of infant cognition. trends in cognitive science, 2023. 27(3): 233-245. doi.org/10.1016/j.tics.2022.12.014. 17. alberts, j.r. (2024) reflecting on motor cortex and its place in developmental care. developmental observer, 17(3): 20-22. doi: 10.14434/do.v17i3.39755 18. als h. (1986) a synactive model of neonatal behavioral organization: framework for the assessment of neurobehavioral development in the premature infant and for the support of infants and parents in the neonatal intensive care environment. physical & occupational therapy in pediatrics. 6(3-4): 3-53. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2024. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our corporate and individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or sent directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer reviewers for the developmental observer are you interested in gaining experience as a reviewer? do you have experience with publications? we are seeking expressions of interest from a range of members of the nfi. please send an email and a brief copy of your cv to: kaye spence, senior editor at kayenfi@gmail.com 24 • 2025 • developmental observer • infants are considered individuals, persons, collaborators in care, supported and nurtured by their parents, enhancing their healthy overall development, well-being, and full potential. • families are considered infants’ key nurturers, advocates, and primary caregivers as well as collaborators in care decisions. • infants, families and professionals are integral partners of the health care team. • hospital environments and culture support and nurture infant and family relationships, and promote individualized strengths, health, growth, and development. • the nfi provides the framework for nidcap care with educational resources, formal training and mentoring to healthcare professionals and families. adopted by the nfi board, may, 2025 a mother's presence nidcap care in the moment congratulations to silke mader and her team on their fantastic achievement on becoming a global organization. the global foundation for the care of newborn infants (gfcni) is a leading global organization and network dedicated to improving the care and outcomes for preterm and sick newborns and their families in each region of the world. drawing on nearly two decades of advocacy, research, and collaboration, gfcni unites patients and their families, healthcare professionals, and global partners to advance neonatal and maternal health worldwide. through innovative projects, evidence-based guidelines, and a strong focus on family-centered care, gfcni drives progress at local, national, and international levels. their work is underpinned by partnerships with parent organizations, universities, medical societies, hospitals, and select industry partners, ensuring that every initiative reflects both expert insight and lived experience. vision a global society in which all hospitalized infants and their families receive care in the evidenced-based nidcap* model. *the newborn individualized developmental care and assessment program (nidcap) model: mission to improve the future for all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap* care by providing and assuring the quality of nidcap education, training and certification for professionals and hospital systems. 2025 • developmental observer • 25 the 36th annual nidcap trainers meeting nidcap: early interaction within a nurturing environment september 16-18, 2025 comwell portside hotel copenhagen, denmark hosted by the four nidcap training centers of denmark and sweden (by invitation only) annual nfi membership meeting tuesday, september 16, 2025 2:45 pm cest comwell portside hotel copenhagen, denmark (members may also attend via zoom) 26 • 2025 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa director and contact: bonnie moyer, ms, pt email: bmoyer12@gmail.com west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc and jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: nidcapchicago@gmail.com national nidcap training center boston children’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard. edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: nadine griffiths, mn and hannah dalrymple, mbbs contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@ health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattingerjürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierrebru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@ uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: tenna gladbo salmonsen, rn, mscn contact: eva jørgensen, rn email: nidcaptrainer@gmail.com danish nidcap training and development center, copenhagen copenhagen university hospital, rigshospitalet copenhagen, denmark director: jannie haaber, rn co-director: porntiva poorisrisak, md, phd contact: jannie haaber, rn, nidcap trainer email: nidcap.rigshospitalet@ regionh.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr saint-brieuc nidcap training center saint-brieuc – paimpol – tréguier hospital center saint-brieuc, france director: marie-cécile androgarcon, md contact: aurélie guillou, rn email: aurelie.guillou@armorsante. bzh nidcap training centre hospitalier de valenciennes valenciennes, france director: sabine rethore, md co-director: juliette barois, md contact: peggy laurant, rn email: p.laurant@orehane.fr 2025 • developmental observer • 27 n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: birgit holzhüter, md email: birgit.holzhueter@med. uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: alberto berardi, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail. com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@ gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid. org sant joan de déu barcelona nidcap training center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: agnes linnér, md, phd co-director: siri lilliesköld, rn, ms contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd contact: beverley hicks, ot email: beverleyann.hicks@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: daliasil1960@gmail.com asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 2025 • developmental observer • 13 introduction working with nidcap trainers-in-training has offered an unparalleled learning experience and an opportunity for enhancing the more traditional nidcap training approach. commitment to the nidcap model as well as to what the trainees have brought to the process has been enlightening, energizing and thought provoking. typically, nidcap trainers-in-training are accomplished nidcap professionals who wish to further promote nidcap with other learners. they bring their own experience and clinical acumen to the process as well as their own adult learning styles and a sense of responsibility for using appropriate mentoring strategies. the nidcap training model focuses on reliable observation and interpretation of the baby’s behavioral communication taught in a dyadic and structured supervision model. trainers-in-training become nidcap professionals as their steppingstone to become trainers. achievement of proficiency to become a nidcap professional has been described as a daunting process, often taking months or years, given that their training may have been intermittent with feedback from their trainer delayed. regardless of the challenges with their initial training, many have the desire to replicate with others the training they receive. it may be opportune to consider an augmented model of training, given that those who have achieved proficiency in their professional lives and have functioned as nidcap professionals have suggested other models for learning, especially when dealing with human interactions and relationships. self-expansion as a theoretical perspective for relationship-based learning. here we describe a theoretical perspective that applies to how individuals strive to expand their capacity--not only for their own learning, but also for how they might bring along others to the integration of nidcap into their clinical repertoire. it centers around relationship-based learning, the importance of providing safe spaces for learners, and the effective use reflective process to support those who will be responsible for training the next generation of nidcap professionals. self-expansion is a model developed by arthur and elaine alon1,2 which articulates a framework for experience and behavior in close relationships. although their initial studies were done for dyadic intimate relationships, it can be applied to the relationship-based work with babies, families and professionals. promoting relationship-based learning is at the heart of the nidcap model and is arguably one of the more difficult aspects to “teach” to new trainees. the self-expansion model could be an important perspective to incorporate into the training of nidcap trainers-in-training so they can better understand their role in relationship development, modeling and mentoring. the self-expansion model has two core principles: (1) the motivation principle refers to an inherent desire to improve oneself and produce others of like thinking around them. self-expansion perspectives posit that individuals wishing to expand their capacities and competencies reflect a need for social approval and acceptance1,3 even if they do not have the foundational skills for achievement at a more complex level. often learners strive to embody the spirit, knowledge base and persona of trainers whom they respect and admire. in this manner, they emulate similar training approaches as their trainer and demonstrate the parallel process of training approaches, from master trainer to trainer-in-training to the trainees. training approaches thus become evident in practice as well as in ongoing policies. striving for self-expansion reflects a conscious effort, however it is typically an unconscious motivation. in the context of nidcap trainers-in-training, those who are motivated to become trainers often underestimate their current skillset and what they can use to meet the rigors of engaging in training others, adapt to a more complex and comprehensive view of the work, and develop effective approaches to systems change. (2) the inclusion-of-other-in-self addresses close relationships as the most effective way to expand a sense of self. individuals who take on perspectives, identities and experiences of others do so through relationships.2,3 as it relates to trainers-in-training, those who take on this next step in the nidcap reflections on the nurturing of nidcap trainers-intraining: creating safe relationships, safe spaces and using reflective process to enhance self-expansion joy v. browne, phd, pcns, imh-e, senior master nidcap trainer; angeline parez, nurse, nidcap professional, nidcap trainer; eveline van dijk, nurse, nidcap professional, nidcap trainer; annelies keymeulen, md, phd, neonatologist, nidcap professional and nidcap trainer-in-training nicu, ghent university hospital, belgium doi:10.14434/do.v18i3.42179 14 • 2025 • developmental observer process are not only motivated to effect change in themselves, but also in others whom they wish to take on as trainees. those who take on the trainer-in-training role commit to a rigorous process of learning with a master trainer who has a focused skill set that includes effective mentoring. active listening, empathy, providing encouragement and practical support are some of the strategies master trainers use. they also involve insuring a safe and encouraging environment for learners to explore individual personal growth. as each person’s learning process and achievements are individual, making room for their own learning and coping styles is important. celebration of their individual small and large achievements provide encouragement and reinforcement for growth. “she consistently confirmed her belief in us and frequently acknowledged our good work. i felt truly seen for who i was – and that was enough. she recognized my insecurities, which made them discussable, and i found the courage to work on them and accept support.” –ap creation of trusting relationships establishment of a trusting and encouraging environment for individuals is necessary and may not be limited to professional aspects of individuals’ lives. individuals’ abilities to learn and be productive include revealing personal information regarding areas such as learning new skills, hobbies, family dynamics, or other personal activities that can contribute to a broader sense of self. aron's research into self-expansion is about generating intimacy in relationships, including mutual information sharing, vulnerability and responsiveness of those engaged in the relationship. “because nidcap is not just about observing well, understanding the baby’s communication, and writing reports – but also involves personal growth – i believe that a trusting relationship is essential for optimal development…creating a safe space for questions and doubts.” –ap checking in with trainers-in-training to be sure that they are managing self-care and personal family situations allows them to feel it is safe to express concerns other than in the training relationship. however, awareness and respect for the trainees’ boundaries and assurance of confidentiality is essential. care should be taken when personal or mental health issues are addressed and referral to other specialized professionals should be suggested when appropriate. sharing personal and professional experiences with a master trainer provides a model for trusting relationships with others whom they are training. for trainers-in-training, developing trusting relationships with their trainees can sometimes be complex, as trainees bring their own background, learning styles and mental health issues, creating a potential challenge for trainers-in-training to establish open communication and trusting relationships with their trainees. disorganizing conversations and/or interactions can challenge their self-confidence and lead to feelings of vulnerability and incompetence in nurturing others. often providing solutions to training challenges is less effective than exploration of strengths and opportunities for problem solving that occur within a safe relationship. “by nature, i tend to be an 'overthinker', but through the guidance and support i received, i have grown in applying self-reflection in a more conscious and balanced way. the safe environment and the trust our master trainer provided helped me feel comfortable being vulnerable and allowed me to look at myself with greater compassion — embracing challenges as part of the learning process.” –evd creating safe spaces for learning and training others a safe space is a supportive and safe environment that encourages open-mindedness, respect, a willingness to learn from others as well as physical, mental, and social safety. in a safe space, the power structures and privileges affecting our everyday lives are consciously considered. “since this learning process is so different from what we know from our medical training, it can bring out feelings of insecurity. and then it is important that you have a trainer where you feel safe with to share those feelings of insecurity without being judged.” –ak how one creates a safe environment includes respect for an individual’s pace and boundaries, as well as measurement of self-expansion. individualized, sensitive, strengths based, thoughtful and relationship-based feedback is essential for growth. active listening, empathy, encouragement, practical support and celebrating trainees’ achievements are foundationtable 1 examples of reflective questions for trainees: • how do you think the baby experienced this? • how do you think the nurse experienced it? • what would you like to say to this baby? • how was it for you? what did you feel or think? • what do you think the baby wanted to tell us? • what do you think the nurse felt when the baby’s oxygen saturation dropped? • the feelings that came up for you – where do you think they came from? 2025 • developmental observer • 15 al components to establishing safe spaces for self-expansion. it's also important to respect individual journeys and processes, allowing them space for self-discovery. the importance of trainers-in-training having a safe space in which to express their vulnerability when facing the challenges of training others cannot be underestimated. nidcap work values .the establishment of safe spaces for growth, especially in emerging trainers, as they are responsible for passing on these values to their trainees, the next generation of nidcap professionals. “ i do believe that feeling safe with your trainer is a must to be able to reflect on yourself, the baby and the process and feeling confident and secure enough to share this with your trainer. i have had a really good example on how to support your trainees in the best way by my own trainer.” –ak using the reflective process in safe spaces to enhance self-expansion with trainees the process of self-expansion is often enhanced through encouragement to engage in the use of the reflective process. use of reflective questions allow for self-examination of strengths, vulnerabilities and successes and can lead to more insightful and successful professional and personal growth. “the safe environment and the trust our master trainer provided helped me feel comfortable being vulnerable and allowed me to look at myself with greater compassion — embracing challenges as part of the learning process.” –evd a reflective approach encourages the trainee to understand the experience of the baby, the family and other professionals. it typically does not come naturally, nor is it typically included in professional education. although the reflective approach is key to understanding the nidcap work, how to “teach” this aspect of training takes development of a trusting, nurturing relationship between trainer and trainee. without this reflective approach, learning typically is slow, task oriented and filled with misunderstandings. just as the nidcap work encourages observers to interpret the baby’s communication and to infer their goals, reflective questions allow for understanding the baby’s experience from the learner’s point of view. for the trainer-in-training, it is helpful to first appreciate reflective questions about their own observations as nidcap professionals (table 1). as they incorporate these questions into their own approach to understanding the baby’s communication, they then can pass on the perspective of the baby’s point of view to their trainees. similarly, they can see the nidcap observation from the caregiver’s point of view without judgment of how the care was provided. “a large part of this learning process is the reflective work. this didn’t always come natural for me to do. but during the process, i grew to appreciate what reflection could achieve: for me as a person during my process as trainer-in-training but also for my trainees and their own process.” –ak “these questions really helped my trainees progress. and i, too, grew, partly thanks to reflection. my master trainer provided us with reflective questions and invited us to brainstorm together. i think this offers a valuable framework for supporting trainers-in-training in their self-reflection. you naturally reflect spontaneously once you graduate from nidcap training, but there are always aspects you don't automatically think about or write down. that's precisely why those targeted questions were so helpful in tracking my own growth.” ap using reflective questions, rather than being offered solutions or assignments, allows the learner to use their own capacity to think deeply about their experience, reveal feelings of vulnerability, create solutions to problems, feel successful and celebrate successes. in essence, it has the capacity for confirmation and expansion of their professional role. “i’ve found that inviting someone to reflect is much more meaningful and impactful than simply “giving feedback”. when you encourage others to reflect on the experience of the baby, the family, the caregiver, their own thoughts, actions, and emotions… it creates a much deeper learning process and insight. one that often doesn’t end when the conversation ends, but continues in the hours, days, and experiences that follow.” –evd using the reflective process in safe spaces to enhance self-expansion with trainees-in-training although the reflective approach is key to understanding the nidcap work, how to “teach” this aspect of training takes development of a trusting, nurturing relationship between nidcap master trainer and nidcap trainer-in-training. without this relationship-based approach, learning typically is slow, task oriented and filled with misunderstandings. “in a way, being offered reflective questions helps you grow a lot because you feel space for learning and trust from your trainer. it would be easier to get responses on our questions that would enlarge our knowledge but with reflective questions we enlarge our knowledge and our self-confidence!.” ap trainers-in-training who have had the opportunity to experience the reflective process with a trusted mentor then have the capacity to provide aspects of the reflective process when working with their trainees. “what i noticed is that people often reflected on how care moments had gone, but much less on how it affected them personally. for me as a trainer, that personal layer was the most interesting, because it offers a window into the trainee’s personal development. for many, reflecting on their own emotions in specific situations is not easy or natural. that’s why offering reflective questions has been a major step forward.” –ap as the reflective process for trainers-in-training is just that…a process, it is important to provide reflective questions 16 • 2025 • developmental observer before, during and as they progress in their capacity to mentor others. several questions (table 2) can be used for self-reflection with the trainers-in-training as they develop their skills. “i believe that being aware of one’s own emotions, strengths, and challenges is essential to fulfilling the role of a nidcap professional and trainer effectively.” –evd a safe space for using reflective questions provides a sense of trust that allows them to safely talk about their own experiences with training others. creating safe spaces where individuals feel comfortable sharing their strengths and vulnerabilities through reflective questions can then lead to growth of the individual and influence how they see themselves fostering others’ growth. “i would have found it very valuable to receive these reflective questions from the very beginning of the trajectory. reflecting on each interaction and examining your own role in it helps you grow. sometimes it feels like something you don't feel like doing but in retrospect, it always provides learning opportunities.” –ap evaluation of the continuum of self-expansion evaluation of an individual’s self-expansion assesses how the individual perceives their own change and growth within the relationship. in the context of nidcap, self and master trainer generated reflective evaluations can provide the trainer-in-training with valuable insight into their own individualized professional and personal growth as well as what encouragement and support they need to further their training effectiveness. “having felt the importance of the ‘safe haven’ your trainer should be, i have tried to provide this safe space for my own trainees. not judging, a lot of listening and using reflective questions during feedback, has proven to create a safe atmosphere for both me and my trainees. it has opened my eyes on how reflection should be part of any training program, not only nidcap and i notice that i have started to use reflective questions in my daily work as trainer of pediatri cians-intraining.” –ak conclusion an individual striving for self-expansion is evident in those who wish to become nidcap trainers. application of the self-expansion model to nidcap training emphasizes the need for a trusting relationship with a nidcap master trainer, a safe space within which to share vulnerabilities, challenges and training successes, and the use of a reflective process to enhance their capacity for training others in the nidcap approach. in contrast to a stringent pass/fail and policy driven approach, application of these approaches can result in optimization of personal and professional development. as such, it encourages parallel process from master trainer to trainers in training to their trainees so that all can successfully emulate the vision for nidcap care and thinking. the parallel process would then influence the care provided by nicu professionals and ultimately affect the care of babies and families. “because this approach supports learning that comes from within, it feels less judgmental or hierarchical. you’re not evaluating or assessing — you’re supporting a process. and that brings so much more than just a sense of 'right' or 'wrong'.” –evd references 1. aron a, aron en. love and the expansion of self: understanding attraction and satisfaction. 1986. hemisphere publishing corp/harper & row publishers. 2. aron a, aron en. knowledge structures in close relationships: a social psychological approach. garth j. o. fletcher, julie fitness. lawrence erlbaum associates. 1996. pp. 325–344. isbn 0-8058-1431-0. oclc 32859244. 3. aron a, lewandowski gw, mashek d, aron en. the self-expansion model of motivation and cognition in close relationships. 2013. oxford university press. doi:10.1093/ oxfordhb/9780195398694.013.0005 for further reading see talmi a. and browne j.v. regulation, relationships and reflection: developmental care in the nicu. in: dempsey ag, cole jcm, saxton sn, editors. behavioral health services with high-risk infants and families: meeting the needs of patients, families, and providers in fetal, neonatal intensive care unit and neonatal follow-up settings. new york: new york: oxford university press; 2022. p. 359-74. table 2 reflective questions for trainers-in-training: • what strengths have i demonstrated in supporting trainees? • what tailored recommendations have i made, and how have they contributed to their growth? • what did i miss in my trainees' abilities or challenges? • how did i create and maintain a safe space for open dialogue about successes and difficulties? • which interactions with trainees would i have handled differently or sooner? • what does my own reflection teach me about my trainees' progress? • what have i learned about my own development as a trainer? • what frustrates me most about being a trainer or trainer-in-training? • what gives me the most energy in this process? • how do i score myself (1 = most organized, 9 = least) as a trainer within my trainees' trajectory? 2025 • developmental observer • 17 introduction from the earliest days of my pregnancy, i felt an unshakable, embodied certainty that my child would be born prematurely. this intuition defied biomedical categorization: i was 31 years, healthy, with no underlying conditions or risk markers. yet my visceral sense of vulnerability guided every decision i made. this paper examines how such embodied knowing—often dismissed as anecdotal—can play a critical, clinically relevant role in neonatal care. parental intuition as multidimensional knowing parental intuition often presents as pre-reflective and bodily, a “gut knowing” that emerges before conscious articulation.1 far from mystical, this form of knowledge synthesizes subtle cues and lived relational context, allowing parents to detect changes in their child’s condition that may precede clinical markers.2,3 this intuitive knowing is also deeply relational, shaped by close observation and attunement to a specific child’s patterns of behavior, breathing, or demeanor. parents develop what is often described as tacit knowledge—an embodied, context-sensitive awareness that can alert them to signs of distress invisible to others. research confirms that parents sometimes detect early signs of deterioration before clinical metrics register concern.1 in this way, parental intuition acts as both a psychosocial and clinical resource. it enhances caregiving efficacy, informs communication with providers, and serves as a protective factor in moments of ambiguity or risk. clinical intuition and the nidcap model clinicians, too, rely on intuition—especially in high-stakes, data-sparse environments like the nicu. the newborn individualized developmental care and assessment program (nidcap) offers a structured framework for training providers to interpret behavioral cues—such as posture, facial expression, to self-regulation—as indicators of an infant’s internal state.4 in the nidcap model, intuition is neither incidental nor unscientific. instead, it is treated as a skill that can be cultivated through observation, reflection, and embodied clinical learning.2 clinicians are taught to recognize subtle, non-verbal signs of stress or stability in the infant, reinforcing that clinical excellence is as much about sensory acuity and presence as it is about technical skill. this alignment of intuition with structured clinical training helps bridge the epistemological gap between empirical and experiential ways of knowing, allowing for a more holistic model of newborn care. case context: stress, vulnerability, and embodied knowing my own pregnancy unfolded within a convergence of destabilizing stressors—what some might call a “life quake.” after disclosing my pregnancy, i was terminated from employment, severing financial security and professional identity at a critical time. our home sustained significant environmental damage from flooding, necessitating partial displacement. a fracture caused by an undiagnosed bone cyst introduced prolonged physical pain. i also experienced vanishing twin syndrome, mourning the intrauterine loss of one twin while continuing to carry the surviving fetus. these events were compounded by a severe case of h1n1 influenza contracted during the height of the h1n1 pandemic. living in a rural, resource-constrained community further magnified risk, as access to emergency care was limited. the stress continued with an unexpected jury summons during my recovery, adding legal obligation and physical exhaustion to an already strained system. these intersecting domains—medical, economic, legal, and environmental—collectively shaped my physiological development. chronic maternal stress, as articulated by coussons-read,5 alters immune and endocrine function, thereby contributing to adverse birth outcomes. mcewen6 conceptualizes this phenomenon as allostatic load: the cumulative “wear and tear” on the body resulting from prolonged stress activation, which disrupts neuroendocrine, immune, and cardiovascular systems. these embodied disruptions heightened my reliance on intuition as a navigational tool. consistent with shaw et al.,1 this intuition may be best understood not as abstract instinct but as a form of practical, embodied knowledge—developed through constant relational attunement to fetal cues, emotional parental intuition and discerning cues katie reginato cascamo, ma doi: 10.14434/do.v18i2.41643courageous steps, gonzaga university usa illu st ra tio n: v ec to rs to ck , c or et x_ pr o 18 • 2025 • developmental observer states, and subtle physiological changes. in contexts where clinical metrics were delayed, ambiguous, or insufficient, intuition emerged as both a psychological and physiological anchor. at seven weeks gestation, my spouse and i debated whether to seek care from a trusted obstetrician located 100 miles from our rural home or to remain within the local rural healthcare system. in deference to my husband, i opted for the local provider—an experienced clinician operating within a system that, at the time, was ill-equipped to fully support his clinical judgment. throughout the pregnancy, i frequently expressed intuitive insights, which were often met with responsiveness, even when they diverged from conventional timelines. at twenty-one weeks, when my son’s future godmother offered to host a baby shower, i instinctively replied, “at twenty-three weeks.” at twenty-four weeks, i purchased emergency airlift insurance, compelled by a strong premonition of imminent complications. a second baby shower was held at twenty-six weeks. upon returning home, my parents and husband assisted in completing our son’s nursery by twenty-eight weeks. by twenty-nine weeks, i had the birthing bag packed and positioned by the door. the night of the airlift: a clinical and existential turning point the night i was airlifted—amidst a blizzard and subzero temperatures—marked a defining moment in my life. the fixed wing plane was not merely transport but a threshold. upon arrival, a coordinated team of clinicians moved in attuned silence. their actions, while technical, carried an unmistakable presence—a relational synchrony that communicated urgency, respect, and care without words. this moment of embodied coordination echoed what jaworski7 calls the “source”—a generative field of collective awareness that lies beneath cognition. it was a moment in which my intuition, the clinicians’ responsiveness, and the high-stakes context converged into a lived experience of care that was at once clinical, emotional, and existential. this experience did not just change my trajectory—it became the foundation of my future scholar-practitioner inquiry. intuition as a source of clinical and systemic learning intuition, as jaworski7 notes, is not merely a private insight but can operate at a collective level—informing leadership, systems thinking, and organizational learning. in nicu and maternal care settings, decisions often must be made rapidly, under conditions of incomplete data. in these contexts, intuitive discernment complements empirical reasoning. moreover, integrating intuitive knowledge into clinical systems enhances not only decision-making but also trust and relational safety between families and providers. validating parental intuition can foster stronger partnerships and reduce missed warning signs, especially for infants who present atypically or whose conditions escalate suddenly. extending intuitive listening across the continuum of care to maximize the potential of intuitive practices, we must extend them across the perinatal continuum: 1. prenatal care: collaborations with obstetricians, midwives, doulas, and community health workers can integrate intuitive listening into prenatal visits, especially when patients report embodied concerns that defy clinical prediction. 2. nicu practice: embedding trust-building conversations that validate parental intuition as credible can improve responsiveness and foster a more inclusive clinical culture. 3. post-discharge support: supporting parents to continue trusting their embodied insights equips them to navigate caregiving responsibilities for medically fragile children over time. these extensions position intuitive listening not as a soft skill but as a sustained, relational practice that supports resilience, improves safety, and enhances outcomes.1,2,3 developing intuitive listening skills mothers can develop intuitive listening with their infants through practices that blend embodied awareness, reflective attention, and responsive caregiving. during pregnancy, tuning into physical and emotional changes helps mothers recognize embodied signals that often precede clinical evidence, particularly in the context of prenatal stress and its effects on development.5,6 intuition should be acknowledged as a form of tacit knowledge, arising from experience and guiding decision-making under uncertainty.2,3 early caregiving interactions, such as holding, mirroring expressions, and observing subtle cues, not only foster attachment but also shape brain pathways it was a moment in which my intuition, the clinicians’ responsiveness, and the high-stakes context converged into a lived experience of care that was at once clinical, emotional, and existential. 2025 • developmental observer • 19 that strengthen intuitive perception.4 reflection further deepens this process, as mothers integrate rational and experiential knowledge into an inner path of knowing that reinforces confidence in their gut responses.7 research demonstrates that parental intuition can detect child illness before clinical signs are apparent, underscoring the value of trusting and articulating these insights in healthcare contexts.1 together, these practices illustrate that intuitive listening is not mystical, but rather a cultivated skill grounded in embodied experience, neurobiological adaptation, and relational attunement. conclusion parental and clinical intuition must be repositioned from the periphery of healthcare to its center—not as anecdotal evidence but as legitimate, embodied knowledge. in maternal and neonatal care, where uncertainty is frequent and stakes are high, intuition is not a luxury—it is a necessity. by cultivating intuitive competence among clinicians and validating it in parents, we enhance both technical performance and relational care. the integration of intuitive insight into clinical systems has the potential to reduce harm, strengthen trust, and rehumanize care at every level. references 1. shaw rl, heath g, eatough v, thackeray l. parental intuition: a phenomenological structure of intuitive knowing in the context of child illness and shared decision-making in healthcare. international journal of qualitative studies on health and well-being, 2015, 20(1). https://doi.org/10.1080/17482631.2025.2491925 2. byrne a, massey d, flenady t, connor j, chua wl, lagadec dl. when nurses worry: a concept analysis of intuition in clinical deterioration. journal of advanced nursing, 2025, 81(8), 4566–4583. https://doi.org/10.1111/jan.16956 3. sanford s, schwartz b, khan y. the role of tacit knowledge in communication and decision-making during emerging public health incidents. international journal of disaster risk reduction, 2020, 50, 101681. doi: 10.1016/j.ijdrr.2020.101681 4. als h, duffy fh, mcanulty gb, rivkin mj, vajapeyam s, mulkern rv, warfield sk, huppi ps, butler sc, conneman n, et al. early experience alters brain function and structure. pediatrics, 2004. 113(4), 846–857. doi: 10.1542/peds.113.4.846 5. coussons-read me. effects of prenatal stress on pregnancy and human development: mechanisms and pathways. obstetric medicine, 2013, 6(2), 52–57. https://doi. org/10.1177/1753495x12473751 6. mcewen bs. allostasis and allostatic load: implications for neuropsychopharmacology. stress and the brain, 2013, 2–18. https://doi.org/10.4324/9781315869865-1 7. jaworski j. source: the inner path of knowledge creation (1st ed.).2012. berrett-koehler publishers. 1st ed. oakland: berrett-koehler publishers; 2012 during the 36th annual nidcap trainers meeting, emeritus nfi member and master nidcap trainer kathleen (kathy) vandenberg, phd, was honored for her significant contributions to the nfi, nidcap, and our community. kathy was one of nidcap’s early pioneers and her contributions have significantly shaped the landscape of newborn intensive care. kathy was among the first nicu developmental specialists, breaking ground in other various roles, including serving as a nidcap and apib professional, director of the third nidcap training center, and master nidcap trainer. her commitment to nidcap led her to become a founding board member of the nidcap federation international, where she helped develop practices that are now integral to our work. beyond her impressive professional accomplishments, kathy was an extraordinary friend. she offered unwavering support, encouragement, and thoughtfulness to those around her. here are message excerpts from individuals whom kathy touched with her warmth and wisdom. i have never met a more-warm hearted, generous spirit. the energy and wisdom she brought to her work was outstanding and is sprinkled like stardust through everything worthwhile that i have achieved in my own work. (inga warren) it didn't matter if you were a conference participant, a mentee, a trainee, a collaborator, or another master trainer your perspectives were welcomed with a gracious smile, a listening ear, and an unreserved encouragement. (joy browne) with kathy’s teaching close to my heart, i will continue to dedicate myself to nurturing the next generation. (noriko moriguchi) kathy was a dynamic force in the world, who positively influenced those who were fortunate to know her. i am a far better person for knowing kathy. and will always treasure her in my heart and mind with much appreciation. (gretchen lawhon) when our son was born, at just 26 weeks, we didn't know what the future would look like. everything felt so overwhelming. then this amazing woman, kathy vandenberg, introduced us to the nidcap program. she gave us hope and strength when we needed it most. and her impact on our family is something we will carry in our hearts forever. (vicki batkin bjornson) kathy’s inspirational presence and dedication paved the way for advancements in newborn developmental care, leaving a lasting impact on the colleagues and families she touched. she has created an extraordinary legacy developing our compassionate developmental caregiving model and approach. honoring kathleen a vandenberg (1945-2025) developmental observer h ow did it come to be that one brilliant woman observed the hospital experience for the most vulnerable, fragile infants and became such an instrumental, invaluable, powerful positive force for change transforming care with lasting positive influences, improving futures for young infants, families and health care partners? heidelise als, or heidi, had an immense intellectual curiosity about life flowers and plants, music, literature… and most of all living beings (especially human). she brilliantly observed connections, articulated complex patterns and systems, translated visions into accessible clinical practice supports, and created and inspired a global community. and in doing so, heidi made the world a better place. a life most definitely well-lived. a continuous thread throughout heidi’s life was the study of how people are shaped by their environments and the development and support for their health, regulation, well-being and potential. on november 8th, 1940, heidelise als was born the middle child of elizabeth and barrister heinrich. her family lived in the beautiful town of krumbach in bavaria germany, between the danube and the alps. yet, heidi’s early years were shaped by an unfathomably horrific time in world history, world war ii in germany. all around heidi, there was death and destruction and suffering from the nazis. her home was invaded and confiscated, forcing her family to live in what she described as a “cramped the voice of newborns, infants, children, families and care partners all around the world 20 22 | v o l 1 5 | n o . 3 the official publication of the nidcap® federation international in the nicu, where technology is at its most complex and densest and infants and families are at their most vulnerable, there is the greatest obligation for transformation and change. to be successful we must become fully present, attuned and accountable to each infant and each family, and effective in supporting optimal development of all infants, families and staff. — heidelise als, 2019 new zealand (continued on p. 2)doi: 10.14434/do:v15i3.35464 heidelise als commemorative issue 8 november 2022 deborah buehler, phd. presented at the 2022 annual nidcap trainers meeting bad boll, germany, october 9, 2022 heidelise als, phd 2 • 2022 • developmental observer attic apartment.” during and following the war, their family experienced poverty and hunger. her father, a well-respected judge, was forced to do hard labor. heidi’s formal education had many layers. heidi studied at the universität wurburg in germany where she majored in education. she graduated summa cum laude and became a third and fourth grade teacher in nürnberg – stein. after meeting her first and future husband, an american, heidi was married in nürnberg, germany in 1964. they moved to philadelphia, pennsylvania in the united states where he was born and his family lived. heidi was accepted to study at the university of pennsylvania and her studies led her to a master’s degree and ultimately a doctorate in education and developmental psychology. her dissertation gave her the opportunity to collect one year outcome data from families, many of whom were facing very difficult challenges due to poverty. she described being “humbled by these families many strengths.” heidi’s study documented that newborns respond to their mothers’ social advances and remarkably also that newborn infants initiate and seek to elicit responses from their mothers. there were many influential people, early in heidi’s life, heidelise als, continued from p. 1 n ovember 8, 1940 was the day our world was gifted with the birth of heidelise als. unfortunately, since dr. als died on august 18, 2022, she will not celebrate her eighty-second birthday. the nfi community has chosen to commemorate heidelise als on this occasion with this special issue of our developmental observer. to commemorate is to remember and to show respect for someone. we provide the formal obituary written for dr. als as well as a more personal story of her life. in this issue we are bringing forward the important messages dr. als gave us in previous developmental observer editions. in our first volume heidi shared with us in a very intimate manner how she learned to see another individual through her experience with her son christopher. she told us that it was through learning her son’s unique strengths and vulnerabilities and how they influenced their nurturing relationship that this was valuable and necessary for newborns. dr. als shared a great deal of her wisdom through the years and i was especially moved by her discussion on the importance of trust in ourselves, infants, families and health professionals. when reviewing dr. als’ past contributions, i was reminded of her enthusiastic pursuit of science through research and feel so fortunate for having been able to be one of her collaborators in early developmental studies in newborn intensive care. occasionally, heidi’s depth of thinking and knowledge in areas not so familiar to me forced me to delve into unfamiliar territory as when she expounded on the similarities between jazz, nidcap and the process of becoming. one of the most intriguing columns heidi gave us was that of the value of silence in which she reminded us of the inherent cost of habituation. sandra kosta shares more about heidi’s love of silence. many of the amazing tributes written to and about heidi are shared representing a true global perspective of her influence. as i shared at our 33rd annual nidcap trainers meeting, just a few weeks ago in germany, heidi was my mentor, guide, colleague and friend for 42 years and i will attempt to honor her through my work with infants and families providing nidcap observations and apib evaluations to support the emerging competence in both infants and parents. it is my sincere hope that this commemorative issue will remind each of you of your own special relationship with dr. als and lead you to reflect on what she inspired in you to pass on to others. gretchen lawhon, phd, rn, faan associate editor – developmental observer clinical nurse scientist/ newborn special care associates, pc/ abington-jefferson health/pa/usa master nidcap trainer/ west coast nidcap and apib training center/ ucsf/ ca/ usa editorial teaching in nürnberg – stein (1962-1964) (continued on p. 3) cover photo of heidi and airi, japan 2007 used with permission 2022 • developmental observer • 3 jeffrey r. alberts, phd, is professor of psychological and brain sciences at indiana university -bloomington (usa). jeff is also a nidcap professional and blends his lab studies with similar research at cincinnati children’s hospital medical center. gretchen lawhon, phd, rn, faan, is the clinical nurse scientist with newborn special care associates, at abington jefferson health and a nidcap master trainer. gretchen has reviewed articles for peer reviewed journals. gretchen has extensive experience as a clinical nurse scientist and has authored numerous articles in her areas of expertise. maría lópez maestro, md, is a neonatologist at the hospital 12 de octubre in madrid, and is a nidcap trainer and member of the national committee for the implementation of developmental centered care in spain. maria has 10 research works. https://orcid.org/0000-0002-0545-6272. debra paul, otr/l, is an occupational therapist and nidcap professional at children’s hospital colorado in aurora, colorado and the column editor for the family voices section for the developmental observer. debra writes policies and guidelines which requires succinct writing and an eye for editing.  kaye spence am is a clinical nurse consultant and clinical researcher with numerous publications in peer reviewed journals and several book chapters and is a peer reviewer for eight professional journals. she is a past editor of neonatal, paediatric and child health nursing. https://orcid.org/0000-0003-1241-9303  diane ballweg, msn, is the developmental specialist at wakemed hospital in raleigh, north carolina, usa. diane’s writing and editing experience also includes reviewing for several peer reviewed journals and authoring several journal publications and book chapters related to developmental care. deborah buehler, phd, is a developmental psychologist with expertise in developmental care within newborn and infant intensive care nurseries. her work has focused on nidcap research, education and mentorship, and awareness. deborah has authored and co-authored papers and manuals pertaining to nidcap care. sandra kosta, ba, nfi executive director of administration and finance, has been an associate editor for the developmental observer since 2007. as a research specialist at boston children’s hospital, sandra has co-authored several papers on the effectiveness and long-term outcomes of nidcap care. editorial board that led to her interest and understanding of premature infants and their families. heidi’s university of pennsylvania advisor/mentor was the remarkable developmental psychologist, sandra scarr, phd. she also studied with renowned solomon katz a physiological anthropologist. heidi’s graduate school studies occurred at a time when the field of neonatology was just developing. one of the earliest nicus in the united states was within the philadelphia general hospital. it was there that heidi’s path to understand newborns and their families led her to meet and study with neonatologists margaret williams, md and maria delivoria papadopoulos, md. these pioneers worked to improve prematurely born infants’ survival as well their cognitive and emotional well-being and the well-being of their mothers. heidi’s exposure to this world and its possibilities lay the foundation for what became her career of understanding and supporting premature infants, their families and healthcare professionals and systems that care for them. in june of 1965, after an uncomplicated pregnancy that went to term, heidi’s son christopher was born. however, the labor and the delivery were difficult and led to christopher developing cerebral palsy, epilepsy, and developmental disabilities. christopher attended special schooling. parenting of a child with disabilities was joyful and challenging for heidi. her marriage did not survive this challenge. dissertation on the first interaction of mother and infant (1968-1972) (continued on p. 4) h. als, 2009 4 • 2022 • developmental observer interested in learning all she could about newborn behavior, heidi had the opportunity, as a graduate student, to be part of the “kitchen table” work group at dr. brazelton’s home. this was when the brazelton neonatal behavioral assessment scale was being developed. after heidi graduated from university of pennsylvania, in 1973, she held an inspiring visiting scholar and scientist appointment. this offered heidi further education and training in human ethology and developmental psychology at the behavior development research unit, directed by anthony ambrose, phd, at st. mary’s hospital in london. she then made the decision to move to boston accepting a research position with t. berry brazelton and his team at boston children’s hospital. heidi became the first trainer of this new brazelton neonatal behavioral assessment scale. heidi later stated “berry shaped my thinking, my work and my personal and professional development. he had a major impact on me as i raised my son, a young child with disabilities. he defended undauntedly the competence of each newborn, each infant and each parent, of all human beings; he valued and brought out the strengths and talents in everyone, everyone’s true goal for good.” after a serendipitous meeting over spilled coffee one day at work at boston children’s hospital, heidi met frank hopkins duffy, md and their story became one of lifelong love. frank a world-renowned neurosurgeon, pediatric neurologist, researcher, and engineer has deep understandings of the developing brain and environmental influences. their work strongly influenced one another’s and by 1978 frank and heidi married and became forever “collaborators on many levels.” with their marriage, heidi and frank’s family grew to include their children from their earlier marriages christopher, lisa, brian and victoria. heidi drew from her understandings of development, ethology and evolution, building on the brazelton assessment. she added the conceptual synactive theory layer as a framework for understanding human, and especially young infant, development. heidi described systems, and their interactions and their continuous environmental interplay. this new instrument, the assessment of preterm infant behavior (apib) was published in 1982 (with co-authors, berry brazelton, barry lester, and ed tronick, her child development unit colleagues). the apib is a comprehensive neurobehavioral assessment of preterm, high-risk and healthy newborns and is used by clinicians and researchers around the world. during this same time, heidi was working very late each evening watching and learning from premature infants in the nicu at the brigham and women’s hospital in boston. she was identifying very small babies’ behaviors and patterns. she was studying the experiences of the families. and she was observing infants’ and families’ experiences of care and the nursery. she was developing a framework. heidi sought ways to support these vulnerable premature babies whom she described as being in a mismatched environment to their stage of fetal development. she partnered with gretchen lawhon, who began to translate her observations into caregiving strategies. as heidi’s research assistant, i supported heidi’s pilot research project’s post-nicu outcome studies. from the department of neurology at boston children’s hospital, frank and gloria mcanulty were laying the groundwork for heidi’s understandings of brain/behavior relationships. t.b. brazelton, md and heidi at the child development unit (boston children’s hospital). model of the synactive organization of behavioral development 2022 • developmental observer • 5 these early experimental supportive care changes showed that this approach was not harmful and instead, very promisingly, beneficial. and nidcap was born. during the follow-up visits, i observed heidi in what seemed like an exquisitely choreographed dance during each apib assessment interaction. in those moments of assessment, heidi became completely attuned to each baby, creating a supportive space for them to tell their story, their fragilities, their strengths, their thresholds to becoming disorganized. i observed her compassionate, reassuring, and thoughtful interactions with families… with masterful clinical skill, parents seemed to feel that she saw their child, really saw them and that they, the parents, were understood as well. heidi’s conversations with parents always acknowledged life and parenting realities and challenges though focused on strengths, supports and next steps. this is the same life affirming, life changing approach that heidi’s trainees and mentees describe experiencing as well. every time that i have heard heidi present, i learned something new. she continually reframed ideas in insightful ways. she brought ideas together from other fields of study. she kept growing understandings with new concepts, from big ideas like synactive and nidcap nurseries to more nuanced ones such as co-regulation and nidcap as humane care. it was as if heidi saw the full picture from the start and was guiding us to see it too. she described parenting as a “process of letting go”. perhaps that construct applies to her nurturance of the nfi, we certainly hope so. she created a tremendous foundation and scaffolding for our current work. we have been left with a model and program that has limitless potential to continue to make the world a better place. heidi was very intentional about everything in her life. and that included the way she dressed, with her blue or grey or beige blazer and the two pins she fastened on her lapel. she wore her pins everywhere she went. one was her nfi membership pin, as she was so very proud to be a member of this extraordinary community. the other was a pin of a swan. that one also held very special meaning to heidi. the swan broach was given to her by her beloved husband frank, decades ago. it was a symbol of her love for her son christopher and the experience of riding the boston public garden’s swan boats together. fascinated by the beauty of swans, heidi took lovely photographs of swans in tübingen after a 2011 training session. pulitzer prize winning american poet mary oliver wrote a poem entitled “swan”. this poem is about noticing what is happening model of the synactive organization of behavioral development the first nidcap team (1982): heidelise als (not pictured), gretchen lawhon, frank duffy, gloria mcnulty and deborah buehler 6 • 2022 • developmental observer in the moment. being present, observant, and thoughtful. for this is when she notes that growth and change occur. heidi was brilliant. she was compassionate. she was wise. she was thorough. she was astute. she was skillful. she was hardworking. she was dedicated. she was very many things. and in every way, heidi had an extraordinary capacity for being completely present. present in conversing, observing, assessing, training, mentoring, writing. whatever heidi was doing, she did it with her full attention, with heart, with skill and with conviction. and within each of these moments, she created change. change for infants’ and families’ experiences, change for caregivers approaches and experiences, change for healthcare systems’ provision of care and environments, and change for all of us directly or indirectly touched by her. heidi’s love for christopher was a source of enduring inspiration. she wrote, “seeing christopher and seeing the world, including myself, with his eyes, has opened my own eyes, and continues to make me more aware and conscious.” in so many profound ways, christopher and heidi inform and inspire all of us. opening ourselves to see and become changed in the process. and in doing so, we change the experiences and lives of others. for years i looked forward to the time that we would have the nidcap trainers meeting in germany and that heidi and i would be together in her native country and my birthplace. alas, here i am in germany with heartfelt thought and memories of heidi, my guide, translator, mentor and friend. just as they say no one can step in the same stream twice – because of the ever-changing water – none of us experienced our relationship with heidi in the same manner. we each have our own unique perspective, history, and memories. i would like to share a few of mine. heidi and i shared an interest and admiration for a woman named sacajawea, an indigenous american who is most wellknown for guiding lewis and clark in their famous expedition across newly acquired western land. as was sacajawea, heidi was not only a guide but also my translator who taught me the behavioral language of our smallest most vulnerable infants in newborn intensive care. in 1980 i courageously introduced myself to heidi, a fascinating woman who observed, with great intensity, many of our tiny infants. she was at that time a nearly 40-year-old scientist who had conceptualized the synactive theory and was developing research that would attempt to minimize the iatrogenic damage to the preterm infant’s brain and maximize their emerging competence within the context of their family and the nicu environment. i was a 25-year-old newly minted clinical nurse specialist recently transitioned from pediatrics to newborn intensive care. i was full of motivation and ambition and thrilled to be assigned as the nurse for heidi’s research study. you are all familiar with the initial developmental care study published in pediatrics in 1986. what you may not know is that nidcap was an incidental side effect of that research. heidi was my guide through the research process and was a brilliant theorist having developed the synactive theory that provided the basis for her ability to translate the behavioral language of the preterm infant for me to understand. throughout the intervention component of the study, heidi would observe the infant which led to the creation of the observation sheet. she then discussed the vulnerability and strength of the inspiration for heidi and for all of us to be the voice of infants and their families. a tribute to heidelise als gretchen lawhon, phd 2022 • developmental observer • 7 infant so we could strategize individualized recommendations for care. i then met with the primary nurse to discuss these recommendations and also ensure that the neonatologists were on board with our innovative ideas. in many ways, i see an analogy of the beauty of how nidcap works similarly to the synactive theory with subsystems of function. looking at the various perspectives and collaborative offerings of psychology, nursing and neonatology interacting in support of the infant within the context of family and physical environment. this multidisciplinary approach is what i believe has made nidcap so effective and powerful. at the end of the first developmental research study, our nurse administrator suggested that heidi and i might teach others how to observe infants and make recommendations for care. she even suggested the acronym nidcap and thus nidcap was born. i became the first nidcap trainee and very soon thereafter the second nidcap trainer. throughout the 1980’s heidi and i travelled extensively doing nidcap training together. we got to know one another extremely well, both our strengths and vulnerabilities. as we supported the developing relationships among infants, families and healthcare professionals, we became more than colleagues. we had amazing experiences together and even some fun times. in oklahoma we once spent a few hours playing in a pool together making up silly jumps off the diving board at the home of our host. we were both fairly anxious doing a hot air balloon ride at 5:00 on the morning of heidi’s pediatric grand rounds presentation, not realizing the special ceremony after one’s first hot air balloon ride, when you have to kneel and drink champagne from a cup on the ground before having some poured on your head. everywhere heidi and i went we were always on the lookout for infants and children we could interact with. heidi taught me an appreciation of flowers. for my fortieth birthday at the oklahoma nidcap trainers meeting heidi gave me an expensive waterman pen. that evening, a few of us were feeling rather free and tipsy when we decided to roll down a hill. the next morning, i confessed to heidi that i had lost my new pen. two weeks later at the contemporary forums developmental conference heidi handed me a small box wrapped in tissue paper with the note “űbermut tut seltan gut, but it was fun and life is short, with love from heidi” (pride goes before the fall). we both loved hair barrettes and for years searched for unique ones to give to one another on special occasions. heidi continues to be my guide as i became a scientist in my own right, obtaining my doctorate. my dissertation built on the nidcap approach to facilitate parenting in newborn intensive care. through our work with some of you, in founding the nidcap federation international, we worked very closely for another nearly 20 years. during that time as we were building the organization and creating numerous levels of training, we had an ongoing joke that heidi had become our yoda. i am so grateful that i had the opportunity at last year’s nidcap trainers meeting, with heidi present virtually, to publicly acknowledge my appreciation for her as my mentor, colleague and friend. heidi was my guide, my translator, mentor, colleague, and my friend for 42 years. i am a far better clinician, scientist and person for having had the privilege of knowing her. in my family, the “heidi factor”, meant that if heidi needed me then all else was less priority and i made myself available to heidi. we did not always agree and it took great courage to make a decision that was not what heidi advised. heidi’s influence on me both professionally and personally is impossible to quantify. in my opinion learning comes with a sense of duty. how can i ever express enough appreciation for what heidi gave me? through heidi i learned the language of the newborn. as a nidcap professional i hold the responsibility and obligation to be the voice of the newborn. with each nidcap observation and apib evaluation i feel heidi’s presence. i interview the infant and discover both vulnerability and strength within emerging competence and development. communicating the infant’s behavior to support parents in their understanding how best to nurture and support their son or daughter’s comfort and development leads to greater confidence and competence in parenting. research shows that greater competence in parenting, in turn, leads to improved infant and child development. this is how i will continue to honor heidi – to live my tribute to her for as long as i am able. heidi and gretchen in japan 2007 8 • 2022 • developmental observer a few of the global tributes to dr. heidelise als and her work “they say you should never meet your hero. ...l did and she did not disappoint” – susan vaughan, cork, ireland “she will be remembered by so many for helping the most fragile and their families“ – dr. christine ganitsch – spouse of john chappel in new york, usa “we have lost a heroine who fought many a battle for babies and families” – inga warren, uk “the nidcap concept changed and widened my mind and actions not only with premature babies but throughout my work and life” – qian su, china “her work, as well as her spirit, have profoundly shaped so many of us and will continue to do so” – kelly and bieke. on behalf of the uz leuven nidcap team, belgium “i treasure the endless hours of deep learning with her and the gifts she gave us of knowing what such small, fragile infants are telling us” – bette flushman, usa “i started out 30+ years ago with heidi whose ripples have touched many hundreds of nidcap professionals and thousands of infants and their families” – elsa sell, usa “heidi changed me as a person through nidcap in my thinking, my actions, and my appreciation of each individual” – daniela grafe, germany 2022 • developmental observer • 9 one, among many, of heidi’s goals for the nicu environment was to quiet the space. she had a deep respect for silence and believed that through quiet reflection one would heal, one would grow stronger, one would become more available mentally, emotionally, physically. upon hearing of heidi’s passing, i felt compelled to read her writings, to somehow conjure and feel her presence. i was drawn immediately to an eloquent piece she wrote many years ago entitled the importance of silence. when i found her “silence” piece and read it again, it resonated with me, not only because i share her respect for silence, but because i felt that, upon the news of her death, there was a ripple of silence that enveloped the globe. i imagined that as people heard, and experienced the shock of the news, it caused them to retreat into themselves and reflect on the conversations they had with heidi… what they may have learned from heidi… the shared moments, the shared laughs, and oh what a laugh she had. this silent collective reflection that i imagined seemed the ultimate tribute to her. self-reflection was of course at the root of her philosophy it was the essence of her being and her teachings and trainings. heidi wrote, “hardly a place remains in the world that is truly silent, still, tranquil. this, almost spiritual quality, is necessary for silence of the mind, an inner peace and a clearing of our pressing thoughts and preoccupations. to ‘hear silence,’ brings openness, inner quietude, an attunement to nature’s sounds, and to our inner selves.” she lived this philosophy and strived to improve environments that seemed counter to tranquility, whether it was the cacophony that sometimes fills a newborn intensive care unit, or a patient waiting room with tvs blaring, or a parking lot rife with the sounds of beeping car locks and alarms. she aimed to quiet the world and succeeded in giving people the tools to quiet themselves in order to be their best selves. she wrote, “the moment we pause in greeting a familiar bird, in watching a flower, observing a person, the pause of listening and tuning in, if only quite simply into our own breathing as meditation teaches us, this is well available to us all. and all of us have the power to cultivate actively an increased awareness of the intrusive noise that we create ourselves. in doing so we can help to reduce and eliminate it.” we are now faced with how to move forward without her force of nature, without her advice, without her insights. if for one moment we could break the silence to hear her laughter it would be pure joy. in her own words, “the practice of silence will give us the strength and the joy to hold the moment, and hold the other in the moment and in silence. being and becoming occurs in being held, being in the moment.” heidi’s quest for ultimate silence was reached on august 18 leaving us all with the opportunity to reflect on the meaning of silence. heidi, i hope that you are indeed now resting in tranquility and i thank you for showing us how to quietly be our best selves. i will miss being quiet with you. we did that well together. ode to silence sandra kosta (written for and read at heidelise als’ funeral) silence by sara teasdale we are anhungered after solitude, deep stillness pure of any speech or sound, soft quiet hovering over pools profound, the silences that on the desert brood, above a windless hush of empty seas, the broad unfurling banners of the dawn, a faery forest where there sleeps a faun; our souls are fain of solitudes like these. o woman who divined our weariness, and set the crown of silence on your art, from what undreamed-of depth within your heart have you sent forth the hush that makes us free to hear an instant, high above earth’s stress, the silent music of infinity? 10 • 2022 • developmental observer h eidelise als, phd, professor, harvard medical school, boston children’s hospital, champion of infants and families of boston, ma and tunbridge, vt, died suddenly on thursday, august 18, 2022. she was professor of psychology, department of psychiatry, emerita, harvard medical school, director, neurobehavioral infant and child studies, boston children’s hospital. she is survived by her husband and research colleague of 44 years, frank h. duffy, md, neurologist at boston children’s hospital and associate professor of neurology, harvard medical school and son christopher hopkins als duffy of camphill village (an anthroposophical community for adults with developmental disabilities). heidelise (heidi) was born in krumbach, germany in 1940, the daughter of elizabeth broicher and heinrich maria als, a barrister. heidi grew up in war-torn and post-world war ii germany. her experiences during these formative years led her to question how people develop their emotions and inspired her to study how people are shaped by their environment. heidi received her bs (1963), summa cum laude from the university of würzburg, germany and phd in developmental and educational psychology (1975) from the university of pennsylvania. during her graduate training, and married to her first husband, heidi gave birth, in 1965, to her son, christopher, a beautiful infant, whose neurological and developmental differences shaped heidi’s career by teaching her to understand that babies communicate and participate in their care if adults would only listen. this understanding led her to create a theoretical model, the synactive theory, which became the foundation for the newborn individualized developmental care and assessment program (nidcap) in 1982. during this year, dr. als established the national nidcap training center, affiliated with both boston children’s hospital and brigham and women’s hospital, which provided a formal structure for nicu professionals to become certified in the use of nidcap. in 2001, to coordinate and support nidcap training and training center development, dr. als founded the nidcap federation international, inc., a non-profit organization that ensures the quality of the nidcap model of developmental care education, training, and implementation and ultimately improves the future for infants in hospitals and their families around the world. today there are 29 centers around the world training in individualized, developmental, family-centered, research-based nidcap care. over 49 years at boston children’s hospital, as director of neurobehavioral infant and child studies, heidi conducted many research projects on premature infants and how early experiences and care affect brain and emotional development from early infancy on to adolescence, publishing more than 150 research papers and giving countless presentations around the world. in addition, she disseminated an educational curriculum for hospital systems change for the education of professionals from many disciplines involved in the care of high-risk newborns in intensive medical care settings. over the last nine months, dr. als with her husband dr. duffy, transitioned to working remotely from their vermont farm. during this time, she conducted remote training with professionals around the world and developed guidelines for online nidcap and apib training and certification methods. during this brief full-time vermont life, heidi found time to revive her garden and bird feeders, bake rhubarb pies for frank and duane lawrence, their friend and farm caretaker on monarch hill, and reconnect with her farm life. a visionary and a prominent scientist, heidelise als has left a legacy that will live on in those she mentored, worked with, and befriended; and in the lives of premature and ill infants and their families, made better by her vision and tireless advocacy. heidi is also survived by and will be held forever in the hearts of family from around the globe including: heidelise als november 8, 1940 august 18, 2022 in memoriam 2022 • developmental observer • 11 her brother, heinzpeter als (rosemarie); nieces, barbara, astrid, maria (björn); great-niece and nephews, konrad, carlotta, mathilda, malte; her sister, urselmarie als (rené haas); niece, joanna ashworth (glen); great-nephew and niece, jonathan, emily; stepdaughter, victoria duffy-hopper; granddaughter galen hopper; stepdaughter, lisa duffy; grandson, brian zagorski; great-granddaughter, river fox; and stepson, stephen; and her farm family, leigh woods, dakota jensen and duane lawrence. she will be forever missed by her neurobehavioral infant and child studies/national nidcap training center team, gloria mcanulty phd, sandra kosta, samantha butler phd, and jack connolly all of boston children’s hospital (bch) and deborah buehler, phd her student who currently serves as the nfi president, and by her entire international nidcap community. in lieu of flowers, heidi requested that donations be made to camphill village copake, ny, www.camphillvillage.org  obituary originally appeared in the boston globe, august 25, 2022 “she taught us that premature babies could communicate and how to support them by giving a prominent place to their parents” – sylvie, céline, nathalie, jacques and sandra on the behalf of the french nidcap team “heidi’s legacy of changing the future for premature infants and their families and all of us professionals will live forever” – até sempre heidi. fátima and the porto nidcap family, portugal “people like heidi may pass physically but they stay with us forever” – lama charafeddine, lebanon “heidi, we’ll remember you with this image… facing the challenges with a smile” – imma and the turin nidcap team, italy “despite her wonderful achievements, dr als remained the same down-toearth woman and role model” – andrea levy, meir hospital nidcap group, israel “i’m thinking of her kind and sweet smile and smiling eyes” – natascia and modena nidcap team, italy www.camphillvillage.org 12 • 2022 • developmental observer this was the first blog of the nfi and published on the website april 30, 2015 www.nidcap.org a s the nfi (nidcap federation international) launches its first blog, it seems appropriate to share how the seeds of nidcap (newborn individualized developmental care and assessment program) germinated. the purpose of the nfi’s blog is to build awareness for our organization and its visionary and dedicated members, who, quite literally, change lives. this and future posts by nidcap researchers, trainers, nidcap professionals, parents of preterm infants, members of our board of directors, and special guest bloggers will provide an opportunity to convey the nfi’s perspective and to receive your comments and questions. life puts us in places that we may come to appreciate in their full significance only later. while a child in germany during world war ii, i saw again and again how overcoming extreme difficulties builds character. this, and all the other hardships around me, shaped me and it inspired me to study how people, from early on, are molded by their environment. when i came to the united states as a graduate student at the university of pennsylvania, i had the good fortune to visit the newborn intensive care unit (nicu) at philadelphia general hospital, one of the earliest nicus in the u.s. at the time. convinced that the dearth of appropriate experiences in the nicu was harmful for these immature human infants, margaret (peggy) williams, md, a pioneer neonatologist, collaborated with my advisor, sandra scarr, phd, a developmental psychologist, to improve not only the infants’ chances of survival but also their cognitive and emotional well-being and that of their inner city mothers. these insightful researchers innovated the first preterm infant developmental care program. colorful mobile birds moved gently above the infants within the incubators. a group of specially trained nurses on this project was encouraged to speak to and gently stroke the infants as well as hold, feed, and rock them. skilled guidance counselor social workers supported the mothers’ well-being resulting in significant positive improvements for both infants and parents.1-3 i had the opportunity to collect the infants’ one-year outcome data, which meant home visits mainly in west philadelphia’s housing project neighborhoods where most taxis refused to go. i met amazing young women, strong grandmothers, and tough appearing young men, all proud of their tiny babies, who had ‘made it’. i witnessed and was humbled by these families’ many strengths. just a year or so later, maria delivoria papadopoulos, md invited me into the nicu at the hospital of the university of pennsylvania, where i was studying the first interactions of fullterm newborn infants with their adolescent inner-city mothers. i jumped at the opportunity to have the chance to watch tiny preterm infants close-up. never mind that i was the ‘bagger’ trying to help the infants breath, and the ‘dabber’ of the neonatologists’ brows as they attempted to exchange fresh blood for the infants’ poorly oxygenated blood in a valiant effort to combat dreaded lung disease.4 my fascination and awe was for the determination of these infants, who curled up, fought against the hands that tried to hold them down and keep them still, and swiped against anything that came towards them. they flailed, arched, and gave their all to get back to what they had been doing in the womb, sucking on their hands and fingers, tucking themselves up into little curled up balls, and cradling and hugging themselves into cozy comfortable positions. when nilsson published his first incredible fiber-optic photographs of the fetus,5 i immediately saw how competent, yet misunderstood, these babies were, and how distinct and individual their different personalities expressed themselves in their behavior. this is when i resolved to figure out how to do justice to their competence, and to warrant and gain their trust. when i gave birth to an infant son of my own, it turned out that he had a neurological problem. i drew from all the birth of nidcap: a personal journey by heidelise als heidelise als, phd, founder, nidcap federation international https://www.biomed.drexel.edu/new04/content/academics/faculty/dsp_faculty_details.cfm?recid=323 https://www.biomed.drexel.edu/new04/content/academics/faculty/dsp_faculty_details.cfm?recid=323 2022 • developmental observer • 13 my life experiences, personal and professional, to understand better what my son was trying to tell me in his own way while he struggled to do his very best. though nidcap has grown over the past 40 years through the dedication of my many colleagues, who are all driven by the passion to care for preterm infants and their parents, it has been the infants themselves, believed in and supported by their parents, who have done the hardest work to reach their potentials. to them, i am ever grateful for the lessons of strengths, courage, and hope that they have taught me. it behooves us to listen closely to the voices of all children, no matter how small at birth, and to their families, heidelise als, phd maria delivoria papadopoulos, md heidelise als with son, christopher notes: 1. williams ml, scarr s. effects of short-term intervention on performance in low-birthweight, disadvantaged children. pediatrics 1971; 47:289-298. 2. scarr-salapatek s, williams ml. a stimulation program for low birth weight infants. am j public health 1972; 62:662-667. 3. scarr-salapatek s, williams ml. the effect of early stimulation on low-birthweight infants. child dev 1973; 44:94-101. 4. delivoria-papadopoulos m, morrow g, oski fa. exchange transfusion in the newborn infant with fresh and “old” blood: the role of storage on 2, 3-diphosphoglycerate, hemoglobin-oxygen affinity, and oxygen release. peds 1971; 79: 898-903. 5. nilsson l. behold man. boston: little, brown and company; 1973. mission the nfi improves the future of all infants in hospitals and their families with individualized, developmental, family-centered, research-based nidcap care. adopted by the nfi board, june 29, 2022 vision the nfi envisions a global society in which all hospitalized newborns and their families receive care in the evidence-based nidcap model. nidcap supports development, enhances strengths and minimizes stress for infants, family and staff who care for them. it is individualized and uses a relationshipbased, family-integrated approach that yields measurable outcomes. adopted by the nfi board, october 20, 2017 14 • 2022 • developmental observer n i d c a p t r a i n i n g c e n t e r s w o r l d w i d e national nidcap training center, boston ma, usa the national nidcap training center was established in 1982 in boston, massachusetts, usa by heidelise als, phd. here is our story… the beginnings in the early 1980s, heidelise als, phd was an independent researcher and clinician within the department of psychiatry at boston children’s hospital. she created her own sub-department, neurobehavioral infant and child studies laboratory (neurobehavioral studies), where she would continue to pursue her scholarly and clinical interest in understanding and supporting prematurely born infants. she had just developed the synactive theory and the relat ed neurobehavioral evaluation, the assessment of preterm infants’ behavior (apib). she was well on her way to conceptualizing what would become the newborn individualized developmental care and assessment program (nidcap). a few years prior to the establishment of nidcap as an organized training program, dr. als and gretchen lawhon, phd (rn, msn, clinical nurse specialist at the time) met in the newborn intensive care unit (nicu) of the boston hospital for women, lying-in division in boston. this was where dr. als was observing infant behavior for one of her early research studies. dr. lawhon and the unit’s nurse manager, rita gibes, bsn, ms, were curious about dr. als’ data collection. they were eager to implement ways to help these vulnerable infants reach their potential based on her intensive observations and support from their caregivers. between 1981 and 1983, with collaboration and support from boston children’s hospital and the nicu leadership at brigham and women’s hospital, the first research study of the nidcap approach was conducted. with evidence of this care being safe, as well as beneficial, this study launched what would become an international movement to change hospital care for infants and their families around the world. the first training center during this initial developmental care research study, dr. als became the first official nidcap trainer as she trained dr. lawhon to nidcap reliability. over the next few years, they collaborated in the development of nidcap (which got its by sandra kosta and samantha butler with much appreciation to deborah buehler, gretchen lawhon and gloria mcanulty for their editing for historical accuracy. samantha butler, sandra kosta, heidelise als, frank duffy and gloria mcanulty 2022 • developmental observer • 15 name from ms. gibes) and subsequently received requests from others to learn this approach. this was how the nidcap training program began. shortly thereafter, the national nidcap training center (nntc) was established at the department of psychiatry at boston children’s hospital and the brigham and women’s hospital nicu, boston. neurobehavioral studies served as the academic umbrella for the training center. within the nntc, dr. als served as the center director and master nidcap trainer. the first person she guided to become a nidcap trainer was dr. lawhon. dr. lawhon became the co-director of the center from 1982-1994. deborah buehler, phd (deborah moir, bs at the time), a research assistant during this period, was trained by dr. als to be an apib trainer and then a nidcap trainer. the apib became a complementary assessment tool in the nidcap training process and dr. buehler played an integral role in apib and nidcap training at the training center. during these first years, the training center focused its training on professionals from us-based newborn intensive care units (nicus). initially, professionals came to boston for training. between 1985 and 1989, students from the university of washington graduate school of nursing came to the brigham and women’s hospital nicu for a clinical rotation to learn about nidcap and its implementation. by the mid to late 1980s, dr. lawhon and dr. als began to travel to other states to train professionals in the nidcap approach. one of their first training experiences outside of boston was at the oklahoma children’s hospital in oklahoma city, oklahoma. martha holmes, msw had come to boston to learn about nidcap. upon her return to oklahoma children’s, a neonatologist from her unit, roger sheldon, md invited drs. als and lawhon to train in their nicu. in 1986, their unit was the second in the us to become a training center and it was the training there that helped dr. als and dr. lawhon to better formulate a clear process, structure, materials and curriculum for nidcap training. between 1990 and 1995, a great deal of nidcap training was accomplished. this included across the northwest of the us as well as hawaii and alaska through dr. lawhon’s role as part of the nicu transition project and nicu follow-through project. this initiative was funded by the u.s. dept. education and the university of washington child development and mental retardation center, with rodd hedlund, med as the director. dr. als and dr. lawhon also trained in oakland, california, albuquerque, new mexico, madison, wisconsin and tucson, arizona, laying the foundation for future nidcap training centers.the nntc team introduced hundreds of nicu professionals to the nidcap approach in these early years and brought many of them to certification. reflective processing reflective process consultation became an essential component of the nidcap training process through the connection that linda gilkerson, phd, of the erikson institute, had with dr. als and dr. lawhon in the late 1980s. at that time, dr. gilkerson became a co-investigator on dr. als’ us department of education funded research study that focused on understanding nidcap’s effectiveness in five different infant hospital settings (four nicus: deliveries in inborn versus outlying from left to right: gretchen lawhon, deborah buehler, rita gibes, linda gilkerson “the national nidcap training center has the responsibility, charge and challenge of the timely and substantive training, consultation, and guidance of trainers and training centers around the world.” -heidelise als, phd, director of the national nidcap training center, 1982-2022 16 • 2022 • developmental observer hospitals and primary versus conventionally scheduled nursing; and one special care nursery). dr. gilkerson consulted to dr. als’ research team on a regular basis. her reflective process approach was determined to be essential for developmental care due to the nature of the developmental care itself, which is theory-guided, systems-oriented and, as all of dr. als’ work, relationship-based. her collaboration and friendship with dr. als had a lasting impact on the nidcap training model. it shaped their thinking about the essential nature of relationships within hospital care and throughout life. dr. gilkerson became an essential collaborator and advisor to the nntc. research and dissemination dr. als successfully secured government and foundation funding to conduct many research studies that would serve as further evidence for nidcap’s effectiveness. the research that emanated from the nntc via neurobehavioral studies inspired others across the globe to replicate and expand nidcap studies to support its integration into infant intensive and special care settings. in the late 1970s and 1980s, frank duffy, md, neurologist, and gloria mcanulty, phd, neuropsychologist, both of boston children’s hospital believed in dr. als’ vision, approach and determination to improve the lives of fragile children and their families. this began a decades long collaboration on the effects of nidcap on brain development and function, deepening the evidence base for nidcap’s effectiveness. in 1986, the first nidcap study was published in pediatrics. this was just the beginning of dr. als’ decades long prolific scholarship at boston children’s and the nntc. dr. als, a proponent of documentation of the positive effects of nidcap on infants, children, families, their caregivers, and the health care system, instilled these values in her nntc team. she and her colleagues went on to publish more than 30 original publications based on her research investigations of nidcap and apib. these investigations were supported by, national institutes of health, the us department of education, the charles h. food foundation, merck family fund, the irving harris foundation, and the john and geraldine rickard weil foundation. in addition, dr. als and her nntc colleagues published more than 30 book chapters on understanding preterm infant behavior. samantha butler, phd carries on this practice with publications regarding the implementation of nidcap in cardiology. dissemination of the nidcap program and its effectiveness was achieved through presentations as well. dr. als was an internationally recognized leader in the developmental assessment and care of preterm and high-risk infants and was world renowned for her inspiring presentations. since the nntc’s inception, she delivered over 120 presentations to local institutions and organizations, such as grand rounds at massachusetts hospitals and universities, as well as more than 140 presentations, primarily keynote speaking engagements, throughout the united states. in addition, she gave more than 130 international presentations, including one or more presentations at nearly every one of the nidcap trainers meetings. most recently, dr. als presented at the cardiac neurodevelopmental outcome collaborative, opening the door to a new world of providers interested in developmentally supporting their patients and families. drs. als and butler had the first opportunity to present together on the nntc and nidcap efforts in boston at the translational neuroscience center at boston children’s hospital and harvard medical school in 2021. in november 2022, dr. butler will give grand rounds in psychiatry in honor of dr. als. training and certification as dissemination of the research results increased, so did the demand for nidcap training. by 2001, dr. als had supported and trained many nidcap professionals and trainers that led to the establishment of 12 us training centers and one european center (sweden). although the nntc began as a “national” center for training in the united states, it expanded to international training in the late 1990s with dr. als’ training of agneta kleberg, phd in sweden, which then allowed easier access to training for european nations. over the course of her directorship at the nntc, dr. als supported over 225 individuals to become nidcap professionals, more than 25 professionals to become nidcap trainers, four nidcap trainers to become nidcap master trainers and three nidcap trainers to become senior nidcap master trainers. the nntc has supported the training of, if not directly trained, all of today’s trainers and dr. als’ consulted to each established nidcap training center. as of her passing, there were 28 active training centers. dr. als was an internationally recognized leader in the developmental assessment and care of preterm and high-risk infants and was world renowned for her inspiring presentations. 2022 • developmental observer • 17 dr. als’ direct training focus became increasingly global, with training across six continents. most recently, she hosted visiting professionals from countries including china, korea and taiwan and travelled to iran. with the aid of unicef, dr. als conducted nidcap training in iran and certified 10 nicu physicians and nurses as nidcap professionals. over the last ten years, dr. als supported dr. samantha butler in bringing nidcap to cardiology at boston children’s hospital with the training of professionals in the cardiac intensive care unit and the acute care cardiology unit, expanding the reach of nidcap outside of the newborn intensive care unit environment. with the onset of the pandemic, dr. als led the effort to develop a formalized online training process. she began to transition to semi-retirement and transfer her direct training to other trainers while maintaining an advisory role. despite this transition, she maintained a key role in the online training process of nicu professionals from rwanda, as well as, zambia. in addition, she was engaged in online apib training of a physician from china. the nntc, under the authority of dr. als, aimed to provide advanced training for nidcap trainers to move to nidcap and apib master trainer status to enhance training availability for the development of additional trainers and training centers. this was a particular focus of hers over the last ten years. the nntc team has maintained the importance to fulfill the critical role in safeguarding the excellence of the approach and of the various levels of professional training established and conducted by others. the establishment of the nidcap federation international research, dissemination and training have always been at the core of the nntc and its base neurobehaviorial studies. in addition to the direct training of professionals, the nntc produced, updated and distributed the nidcap training program materials and assessed the need for updates, improvements and the assurance of its quality. up until 2001, as dr. als wrote, “…the nntc had the responsibility, charge and challenge of the timely and substantive training, consultation, and guidance of trainers and training centers around the world.” dr. als consulted to each of the trainers and centers. additionally, the nntc organized the annual nidcap trainers meetings, from invitations to program planning, and developed and maintained the training database that documented training across the globe. in the years leading up to 2001, it was evident that a structured organization was necessary to oversee the growing global demand for nidcap training. therefore, the nidcap federation international, inc (nfi) was formed, and incorporated, as a non-profit (501c3) professional membership organization in massachusetts in 2001. several members of the nntc, past and present, are founding members of the organization including, dr. als, dr. lawhon, dr. buehler, dr. gilkerson and dr. mcanulty. dr. als was the first president of the nfi from 2001 to 2012. she was also the chair of the quality assurance committee from 2001 to 2012, and the newly formed program committee chair from 2012 to 2018, and the co-chair of the program committee from 2018 to her passing. following dr. als’ tenure as nfi president, dr. lawhon served as president for four years and now dr. buehler is the current nfi president, serving in her seventh year. dr. mcanulty has been the treasurer and chair of the finance committee since 2001. sandra kosta has maintained a role in the nfi since its inception, as secretary, assistant treasurer, board member and currently the executive director of administration and finance. the responsibilities that were once solely that of the nntc were now spread under the authority of the nfi board of directors. as many members of the nntc held key positions in the nfi, the work of the nntc became more heavily focused on quality assurance, the development of policies, the nfi website, and the financial management and sustainability of the organization. since many of the programmatic and training responsibilities were the responsibility of the nntc, it became important to recognize that a succession plan was necessary to sustain the level of oversight, development and quality of training. the last ten or more years were spent executing this succession plan. dr. als stepped away from the nfi presidency making way for others to assume the organization’s leadership. she prepared dorothy vittner, phd to serve as the chairperson of the program committee to assure the continuity of the training process. she finalized the master training status of several individuals who now train trainers to guide and mentor others in the approach, thus securing the future of nidcap in newborn intensive care settings and beyond. members of the national nidcap training center current in addition to dr. als, who served as the nntc director from its inception until her death in august 2022, the nntc has a small though dedicated group of individuals who maintain the operations of the center. gloria mcanulty, phd, has collaborated with dr. als on infant behavior and brain studies since the mid1980s. in the 1990s, dr. mcanulty became an integral part of the research studies as statistician and neuropsychologist and co-investigator disseminating the results. she served as the nntc’s senior developmental care educator. sandra kosta, ba, joined neurobehavioral infant and studies in 1990 as a research study coordinator, and was engaged in all things related to the research process from scheduling studies to testing research patients to data analysis and grant 18 • 2022 • developmental observer and publication writing. simultaneously, under the nntc, she managed dr. als’ training efforts, as well as the training database as the developmental care education and training facilitator. in addition, she managed the organizational aspects of the annual trainers meetings. frank duffy, md, dr. als’ beloved husband, pediatric neurologist and research colleague has been instrumental in understandings of brain development. this knowledge has been integrated into nidcap’s philosophy, caregiving approach and training program. dr. duffy has collaborated, since nidcap’s inception, on the research documenting nidcap’s effect on brain function. most recently, has been developing a computerized program for digital scoring of the apib. samantha butler, phd, began her career at neurobehavioral studies in 2001 as a research associate participating in the nidcap research studies. she is certified in the apib and recently became a nidcap trainer. she currently is the director of inpatient neurodevelopment in the cardiac neurodevelopmental program where she is working to implement nidcap into the cardiac intensive care unit and acute care cardiology unit at boston children’s hospital. dr. butler will assume the role of nntc director. former members of the nntc over the years, the nntc has been host to many professionals who came for work, internships and fellowships. the following individuals became nidcap trainers and/or center directors at training centers beyond the nntc: gretchen lawhon, phd, as described earlier, was integral to the early beginnings of the nntc and remained a trainer with the nntc from 1984 through 1994 and was co-director of the center from 1989-1994. she returned to the nntc as co-director and trainer from january 2003 through july 2005. dr. lawhon went on to have center directorships at two other training centers: the sapta nidcap center at toledo children’s hospital in toledo, ohio from january 1995 through december 2002 and the mid-atlantic nidcap center at the children’s regional hospital at cooper university hospital in camden, new jersey from august 2005 through december 2013. dr. lawhon is currently a nidcap master trainer with the west coast nidcap and apib training center. deborah buehler, phd, also an early member of the nntc, began as an apib and nidcap trainer. she remained at the nntc from 1982-1995. upon moving to california, she became affiliated with the west coast nidcap training center, which at the time was in palo alto, ca. dr. buehler continues to do apib training all over the world and is currently the director of the west coast nidcap and apib training center at university of california san francisco school of medicine. deana demare, pt, worked at neurobehavioral studies as a developmental specialist and was an integral member of the research team from 1989 to 1993. ms. demare went on to become a nidcap training center director and nidcap trainer with the mid-atlantic nidcap center at the children’s regional hospital at cooper university hospital in camden, new jersey. laurie mouradian, phd, volunteered in the neurobehavioral studies in the late 1980s to the early 1990s while an occupational therapy doctoral student in boston. during this time, she was mentored and trained in nidcap and apib by drs. als and buehler. she became a nidcap trainer and she went on to become the director of the sooner nidcap training center at the university of oklahoma health sciences center in oklahoma city, oklahoma. dr. mouradian was instrumental in developing and expanding an extensive network of developmental care implementation for the state of oklahoma and neighboring states. christine fischer, md, a physician from heidelberg, germany, came to nntc in 1998 as a research associate and became a nidcap trainer. dr. fischer’s career path led her to become a doula and a lactation consultant supporting mothers, newborns and families. nikk conneman, md, a neonatologist from leiden university at the time, was a member of the nntc between former members of the nntc, left to right, deborah buehler, gretchen lawhon, deana demare, laurie mouradian, christine fischer, and nikk conneman 2022 • developmental observer • 19 2001-2002. already a nidcap professional when he arrived, he wished to pursue the path to nidcap trainer. during his stay, he mentored samantha butler, phd as part of his nidcap trainer training under the supervision of dr. als. he was also an integral part of dr. als’ research studies. he is currently a nidcap master trainer and the center director of the sophia nidcap training center, rotterdam, the netherlands. the future of the national nidcap training center dr. heidelise als will be sorely missed by the nntc family. we will work to carry on her teaching through training, research and dissemination. we will continue to support training in our home hospital in both neonatology and cardiology. we are hopeful to begin training outside of our hospital in the next few years with the interest of several cardiac units. we will continue to advocate for nidcap care for all patients, including older infants and children. we will continue to provide documentation of the usefulness of nidcap through grant funded research and publications. dr. duffy, dr. mcanulty, and ms. kosta, continue to work on the development of a computerized automated reduction of the apib’s raw score variables to summary variables. drs. als and buehler began to update the apib manual and this work will continue with the support of dr. butler. dr. als and the nidcap nursery program steering committee were working to update the nidcap nursery manual and this work will also continue to move forward. the basis for the nidcap approach and the nfi has its roots within the nntc. forty years ago, dr. als planted the seeds for new growth in the area of understandings of infant development and support for infants who are hospitalized, for their families, for the healthcare professionals and staff members who care for them, as well for their hospital and community systems. dr. als’ colleagues have worked with her for the last 40 years to foster the growth, to disseminate the knowledge, to support and expand training efforts. the national nidcap training center team is committed to fostering the legacy of dr. heidelise als and improving the future of all infants in intensive care and their families. acknowledgements the national nidcap training center team has made and continues to make great strides in nidcap training, dissemination and preparations for the future. none of this work would be possible without the support of charitable donors inspired by the mission, most especially the irving harris foundation. the nntc team is grateful to the harris foundation for their decades long (1990) support of dr. heidelise als, her research effort, her training center and our mission to secure the future of nidcap. we wish to further acknowledge and thank the john leopold and geraldine rickard weil memorial charitable trust and the john and deborah buehler family foundation, both of whom have supported the national nidcap training center in their effort to secure the legacy of nidcap. the national nidcap training center team: samantha butler, sandra kosta, gloria mcanulty, frank duffy and heidelise als 20 • 2022 • developmental observer one of the perhaps less visible threads of the nidcap journey is the life of my son christopher markoe rivinus duffy. christopher, born fullterm, sustained brain injuries during the delivery process and has taught me the essence and importance of seeing a child, seeing the child’s strengths, while being fully aware of and embracing his disabilities as part of him. seeing him and seeing the world, including myself, with his eyes has opened my own eyes, and continues to make me more aware and conscious. it has shaped my life and career, and has offered me the gift to see infants and parents in a deeper way. christopher informed my decision to study human behavior in greater depths. i learned that intuitive parenting1 must become conscious parenting when the child’s individuality portrays behaviors other than human expectation has prepared us for in the thousands of years of evolution to be good enough parents. i also learned from christopher that each child actively shapes the adults and the environment around him or her, and that the adult, who becomes aware and has the emotional where-with-all to open earlier well-practiced ways, and see the child, becomes the better for it. this mindfulness and the attunement to grow oneself, shape the environment and all interaction to nurture, bring out the best in, and cherish the other person, is the mark of a trusting relationship. children, who are unusual, help us better appreciate the dynamics of all children’s development, and help us understand that all children are unusual, uniquely talented, and individual. we learn that what is good, and perhaps necessary to support the unusual child, is good for all children, and for all persons, and all relationships. bowlby’s volume on attachment2 partly validated my thinking. yet i disagreed that the human newborn infant only keeps the mother close by crying, until at about 5 to 6 weeks. i found it difficult to imagine that as a species, we would survive if no other infant stimulus but crying kept us engaged for the first six weeks. our ancestors likely would have discarded us a long time ago. as it turns out the newborn’s eye opening and eye contact is the great reward that as adults we quite intuitively work and live for.3-5 when that eye contact is hard to come by, when its occurrence, characteristics, or frequency violate the adult’s expectation, the interaction threatens to derail. however, when the parent becomes conscious of the infant’s profile and the intuitive interaction’s difference, the ensuing self-awareness and awareness of the child’s individuality may help the parent right the relationship and interaction. in order to understand these neuro-biologic-social-affective processes more fully, i spent a year rich in experience and learning at the behavior development research unit (bdru) at st. mary’s hospital in london, uk. anthony (toni) ambrose, phd,6, 7 director of the bdru, studied the dynamic parameters of pregnant women’s walking in order to test a gait-simulating moving cradle, in an effort to soothe unusually irritable newborns. genevieve carpenter, phd,8, 9, 10 also at the bdru, identified how very early newborn infants reliably distinguish their mother’s face from another woman’s face. olga maratos11 then a greek doctoral student at the bdru in 1972, now professor of psychology at the university of athens, discovered the newborn’s capacity to imitate specific facial ex“i found it difficult to imagine that as a species, we would survive if no other infant stimulus but crying kept us engaged for the first six weeks.” frank h. duffy, md, christopher m. r. duffy and heidelise als, phd preparing to see and seeing from the developmental observer 2007, volume 1, number 2 the following articles are reproduced from the developmental observer as a testament to the breadth of the thinking and work of dr heidelise als. 2022 • developmental observer • 21 pressions and arm movements of the interacting adult, including sticking out the tongue. andrew meltzoff made famous this finding.12 i had contact with nick blurton-jones, the first human ethologist to my knowledge,13-15 who observed young children’s interactions on the playground. my own research in london focused on the observational study of relationship-based mutual goal sharing of healthy fullterm newborns and their mothers, who experienced rooming-in from birth to 30 days, a new concept at the time. i also serially assessed the infants with the brazelton neonatal behavioral assessment scale.16 i learned of the mutual interplay and shaping of infants’ and parents’ goals as expressed in the infants’ levels of arousal and irritability and the mothers’ efforts to regulate their infants. infants, who were hypersensitive, easily overly aroused, and irritable, tended to have mothers who actively attempted to soothe them; the infants gradually became calmer and the mothers less concerned with soothing activities. infants who were placid, low active and difficult to wake and engage, tended to have mothers, who attempted to stimulate and arouse their infants. these infants gradually took more initiative, and more actively engaged their mothers; the mothers responded to them in increasingly calmer ways.17 in an effort to deepen my knowledge and understanding, i then joined t. berry brazelton at his newly founded (1972) child development unit, at children’s hospital boston. his generous mentorship and brilliant teaching convinced me of the importance of translation of clinical expertise into empirically testable questions. the opportunity to operationalize clinical skill and insight helped me focus my research on the fullterm infant’s strengths and capacities, the openness of the parents18-20 to hear and see, and to seek and accept support as at no other time in their lives. i learned about the infants’ and parents’ striving for connection and relationship from the first moments on. i learned that infants will struggle to connect with the parent, and vice versa, even in the face of an infant’s intrinsic difference,21-25 and in the face of experimentally imposed violation of expectation such as in the still-face mother paradigm.23, 26-29 not least, my growing son christopher helped me understand this striving manifold, and at times at more cost to him than i wished, he had to pay. these experiences prepared and motivated me to venture and attempt to see anew, with better skilled eyes, the preterm infant requiring intensive care. in 1975, now at the boston hospital for women, lying-in division, my goal had become to learn to read and understand the language of the preterm infant, to learn and document what the preterm infants experienced, how the nicu experience influenced and shaped and perhaps inadvertently changed and possibly damaged the infant. for the next year or so i observed, wrote, rewrote, and edited repeatedly the basic dictionary of the infants’ communications in the face of various events and circumstances. i realized that the behavioral messages involved various subsystems and that depending on the challenge and/or the immaturity or illness of the infant, even the most basic autonomic system functioning might be overtaxed and become overwhelmed.30 the infant might simply stop. often my own helplessness frightened me, yet the infants’ and the caregivers’ determination in turn assured me that they somehow tried their best to work together at this life too early outside the womb. i felt pressure to translate my observations into a coherent system that would be usable by others. i wanted to articulate the subsystems in their interplay and fluctuating relationship to one another and to the environment and events that occurred with, to, and around the infants, in order to support those who cared for the infants to see them as their collaborators and recognize their goals, determination, and their strengths, as well as their thresholds to stress. the assessment of preterm infants’ behavior31, 32 took shape together with its core, the systems sheet. i sketched and re-sketched the complex sub-systems in interaction, struggled with images and words, and wrote and re-wrote what became the synactive theory of development.33 in the effort to see and take seriously the support to the infant in helping the infant achieve his or her own goals, close communication and collaboration became essential with those who cared for the infants in the nicu, and who structured their environments. pat linton thompson, and soon gretchen lawhon, nicu nurses at the time, were the brave pioneers, who first removed the ties that held an infant’s arms and legs in place; bedded an infant on the side; made soft nests for the infant to cuddle and tuck into; covered the infant to feel more secure, and the incubator to shield the infant from the bright lights; assured a comfortable chair for the parents at their infant’s bedside; supported the parents to hold their tiny infant; and assured the neonatologists that all this was not only safe, but also supportive of the infants’ and their parents’ development. all the while, the detailed infant behavioral observations helped us stay true to each individual infant and assured us of the current appropriateness of the modifications and adaptations of care. rita gibes, rn, msn, nicu head-nurse at the newly merged brigham and women’s hospital, quickly recog“these experiences prepared and motivated me to venture and attempt to see anew, with better skilled eyes, the preterm infant requiring intensive care.” 22 • 2022 • developmental observer nized the great advantages this approach entailed, and became the first leadership professional to support the individualized developmental approach to care. she was a courageous change agent par excellence and insisted on the first ever installation of individual lights with dimmer switch capacity above each warming table, incubator and crib; an invitation to the parents to be with their infant at all times; and advocated for us and our observations and care modifications. she established the first ever “developmental care clinical nurse specialist” position for gretchen lawhon. in addition, she insisted that the approach required its own name in order for others to adopt it. she coined the acronym “nidcap.” elizabeth “liz” brown, md was painfully familiar with infants who struggled to breathe and to eat; who did not sleep, had trouble gaining weight, vomited often, and arched their backs all the time; infants with retracted shoulders, wideeyed panicked facial expressions, and extended limbs. she cared for them in the nicu and after nicu discharge in the “bpd (bronchopulmonary dysplasia) clinic.” liz was the first neonatologist who expressed her hopes that nidcap would improve these infants’ quality of life and perhaps reduce the severity of their lung disease. together we wrote the first grant application to the h. p. hood foundation in order to test foremost the safety, and perhaps even the efficacy of the nidcap approach to care. this first small nidcap study, published in pediatrics in 1986,34 had very encouraging results, and fueled our courage to continue to pursue this individualized approach and learn more about it, how to teach it, and how to make it systems effective. around the same time, christopher, now a young man, prompted my husband frank duffy and me to find an environment and life setting that built on similarly synactive principles as did the nicu work. after heart breaking searching, visits, and experiences at the traditional adult environments for persons with disabilities, we miraculously found camphill village copake, an anthroposophical village, based on the principles of rudolf steiner, (1861-1925) an austrian philosopher, who mainly worked and lived in germany. his conceptualizations also underlie the waldorf schools. he inspired karl könig (1902-1964), the austrian pediatrician and specialist in learning and developmental disabilities, who then founded the camphill movement, an international movement of therapeutic “intentional” communities for those with special needs or disabilities, where all may thrive, as they live and work together. just as in the nidcap work, the camphill social and relationship-based fabric, and work and life environments aim to bring out, liberate, develop, and cultivate the competence, creativity, fulfillment, and mutual caring in every person, no matter their talent. while ending this essay, i continue to learn from christopher, from my husband, all those who make camphill the special place it is, from those engaged in the nidcap work and world with me, and from all the infants and families and the professionals who care for them. we are all connected; we mutually support, teach, learn from, and enrich one another. to be continued. heidelise als, phd references: 1. papousek h, papousek m. intuitive parenting: aspects related to educational psychology. european journal of psychology of education. 1989; 4 (2):201-210. 2. bowlby j. attachment. vol i. new york: basic books, inc.; 1969. 3. als h. the human newborn and his mother: an ethological study of their interaction. (doctoral dissertation, university of pennsylvania, 1975). dissert abs int. 1975;36:5. 4. als h. the newborn communicates. j commun. 1977;27:66-73. 5. grossman k. die wirkung des augenöffnens von neugeborenen auf das verhalten ihrer mutter. geburtshilfe und frauenheilkunde. 1978;38:629-635. 6. ambrose a. the age of onset of ambivalence in early infancy: indications from the study of laughing. journal of child psychology & psychiatry. 1963;4(3):167-181. 7. ambrose a. stimulation in early infancy. oxford, england: academic press; 1969. 8. carpenter gc, tecce jj, stechler g, friedman s. differential visual behavior to human and humanoid faces in early infancy. merrill-palmer quarterly. 1970;16(1):91-108. 9. carpenter gc. visual regard of moving and stationary faces in early infancy. merrill-palmer quarterly. 1974;20(3):181-194. 10. carpenter gc, london univ. saint mary’s hospital medical s. mother-stranger discrimination in the early weeks of life; 1973. 11. maratos o. the origin and development of imitation in the first six months of life; 1973. unpublished manuscript. 12. meltzoff an, moore mk. imitation of facial and manual gestures by human neonates. sc. 1977;198:75-78. 13. blurton jones n. characteristics of ethological studies of human behavior. in: blurton jones n, ed. ethological studies of child behavior. cambridge: cambridge university press; 1972:3-37. 14. blurton jones n. ethology and early socialization. in: richards mpm, ed. the integration of a child into a social world. cambridge: cambridge university; 1974:263-295. 15. blurton jones n. growing points in human ethology: another link between ethology and the social sciences. in: bateson ppg, hinde ra, eds. growing points in ethology. cambridge: cambridge university press; 1976:427451. 16. brazelton tb. neonatal behavioral assessment scale. london: heinemann; 1973. 17. als h. autonomous state control: the first stage in successful negotiation of parent-infant interaction. paper presented at: meetings of the american academy of child psychiatry, 1976; toronto. 18. brazelton tb, koslowski b, main m. the origin of reciprocity in the mother infant interaction. in: lewis m, rosenblum la, eds. the effect of the infant on its care giver. vol i. new york: john wiley and sons, inc.; 1974:49-76. 19. brazelton tb. early parent-infant reciprocity. in: gardner jk, ed. readings in developmental psychology. boston: little, brown and company; 1978:71-78. 20. brazelton tb, als h. four early stages in the development of mother-infant interaction. the psychoanalytic study of the child. 1979;34:349-369. 21. als h, tronick, e., brazelton, t.b. the achievement of affective reciprocity and the beginnings of the development of autonomy: the study of a blind infant. jrnl. am. ac. of child psy. 1980;19:22-40. 22. adamson l, als h, tronick e, brazelton tb. the development of social reciprocity between a sighted infant and her blind parents. a case study. journal of the american academy of child psychiatry. 1977;16:194-207. 23. als h. social interaction: dynamic matrix for developing behavioral organization. in: uzgiris ic, ed. social interaction and communication in infancy: new directions for child development. san francisco, calif.: jossey-bass; 1979:21-41. “we are all connected; we mutually support, teach, learn from, and enrich one another.” 2022 • developmental observer • 23 24. als h. the unfolding of behavioral organization in the face of a biological violation. in: tronick e, ed. human communication and the joint regulation of behavior. baltimore, md: university park press; 1982:125-160. 25. mintzer d, als h, tronick ez, brazelton tb. parenting an infant with a birth defect: the regulation of self-esteem. zero to three. 1985;5(5):1-8. 26. tronick e, als h, brazelton tb. the infant’s capacity to regulate mutuality in face to face interaction. j. communication. 1977;27:74-80. 27. tronick ed, als h, brazelton tb. mutuality in mother-infant interaction. journal of communication. 1977;27:74-79. 28. tronick e, als h, adamson l, wise s, brazelton tb. the infant’s response to entrapment between contradictory messages in face-to-face interaction. journal of the american academy of child psychiatry. 1978;17:1-13. 29. tronick ez. emotions and emotional communication in infants. amer. psychol. 1989;44:112-119. 30. als h. manual for the naturalistic observation of the newborn (preterm and fullterm). vol revision. boston: the children’s hospital; 1984. 31. als h, lester bm, tronick ez, brazelton tb. towards a research instrument for the assessment of preterm infants’ behavior. in: fitzgerald he, lester bm, yogman mw, eds. theory and research in behavioral pediatrics. vol 1. new york: plenum press; 1982:35-63. 32. als h, lester bm, tronick ez, brazelton tb. manual for the assessment of preterm infants’ behavior (apib). in: fitzgerald he, lester bm, yogman mw, eds. theory and research in behavioral pediatrics. vol 1. new york: plenum press; 1982:65-132. 33. als h. toward a synactive theory of development: promise for the assessment of infant individuality. inf mental health j. 1982;3:229-243. 34. als h, lawhon g, brown e, et al. individualized behavioral and environmental care for the very low birth weight preterm infant at high risk for bronchopulmonary dysplasia: neonatal intensive care unit and developmental outcome. pediatr. 1986;78:1123-1132. when recently visiting a relatively wealthy north african country, i had the opportunity to visit the capital city’s university children’s hospital nicu. iron grey, factory-like open hall with cold fluorescent ceiling lights over metal cots and large, bulky milky-plastic incubators lined up along a seemingly endless long wall. shrill alarm, pager and telephone sounds incessantly pierced the air. i had come with high expectations. suddenly i felt transported back to the nicu-world of the 70’s in the united states. despite the internet and on-line worldwide access to many professional publications, and numerous international medical congresses, thousands of emaciated and limp infants, clad only in huge plastic diapers, still lie on their backs, depressed and alone in many countries and cities all over the world. newly admitted infants, arching and protesting their treatments and abandonment quickly become subdued by relentless routine intensive care that emphasizes equipment and antiseptic procedures above all else. it is difficult and painful to remember that just 30 years ago most nicu care was like that. only professionals were admitted to the unit. loudspeakers overhead incessantly announced lectures and doctors’ pages from anywhere in the entire hospital. cleaning buckets and buffing machines, and those who operated them, merrily entered the nicu at any time. staff members, well intentioned, called to one another from the entrance door to the farthest incubator’s nurse and doctor. the understanding we have gained over the past three decades in reading the infant’s language has made it increasingly clear that the parents are quintessential and critically important to ease the infant’s often abrupt and unexpected transition from the womb to the nicu. we have learned that parents are the best medium for healing and development. gradually parents’ presence has become increasingly familiar to the technically trained nicu staff. early on, parents were often relegated to standing at the incubator for short periods of time, as they gradually gained the trust of the staff that indeed they know and care deeply about their infant. yet they also dutifully leave when the messages (whether spoken, in gesture, explicit in the emotional ambience, or the physical environment) tell them that they have outstayed their welcome. often the parent booklet they receive states explicitly that they are invited to come at any time, 24 hours around the clock. yet, still today in too many nicus, even in those with individual family rooms for each infant and family, it’s still a struggle for staff to live up to their own best proclamations. the mother or father who comes to be with their infant at seven o’clock in the morning and reluctantly leaves at eleven o’clock at night, may still today, in a modern nicu, be described as “controlling” and mistrustful of the staff ’s skill and caring. much staff education, emotional support and guidance is still required to effectively enhance staff confidence and trust to truly value the parents as collaborators and their infants’ foremost caregivers, nurturers, and life-long safe havens. less psychologically demanding innovations over the last 30 years have become standard care by now in many us and european nicus (e.g. all infants have nests and many incubators are covered; everyone appears to know about the importance of non-nutritive sucking, of support to midline positions, and of the values of skin-to-skin holding or kangaroo care). the bigger step is the astute appreciation of each infant’s thresholds to stress and the conclusions to draw from this recognition for the individualization of care and experience for infant and family, including: the slow pacing of care; feeding only while holding the infant; support to falling and staying asleep while held for prolonged periods; and the many subtle aspects that truly enhance an the courage to trust message from the nfi president from the developmental observer 2008, volume 2, number 2 24 • 2022 • developmental observer infant’s competence and reduce stress. while everyone is concerned about brain growth and nutrition, the way the nutrition is delivered and received by infants still poses a challenge. the infant’s active partnership in all care collaboration, the only way that care may become effective as intended, is a continued and active topic for staff education. the situation becomes startling when all of the considerations are still below the threshold of conscious staff awareness: a nicu where mothers come reliably every morning to bring the milk that they have pumped at home for their infants and pass it through a small window to an anonymous hand on the other side; where parents come every day at a fixed hour in the afternoon for 10 minutes to stand in a dilapidated corridor and look into the nicu through a dirty, milky, scratched glass window, to see only the incubators and perhaps catch a glimpse of their infant’s feet as they extend toward the foot end of the incubator; or hear an infant, maybe their own infant, cry with no one to attend to and comfort the upset child; where nurses with sad, yearning eyes wistfully care for their forlorn charges with little hope to find understanding from their leadership; and where money is spent on technical innovations yet is not available for pacifiers, blankets, chairs, and support and education to nurses and young doctors, who are still hopeful and seek to make a difference. every day the staff cares for the smallest and sickest infants, every day they sustain the pain of their forlorn charges, their emotions and creativity held down, restricted and bent to the rules that govern the system from the top. when death is almost hoped for and is the likely future of a preterm infant; when families are left to their own devices for rehabilitation and care should their infant survive the nicu; when even those with minor disabilities can expect a future fraught with difficulties; then nidcap and the nidcap stance and spirit are very much warranted as critical care components within the hospital system. nidcap, a systems approach, helps bring about systemic change, not only nicu and hospital system change, but also societal and political system change. each infant and each family count. each infant and each family are valuable. but where to begin? anywhere is better than not at all: one infant and one family at a time; one nurse and one doctor at a time; one nicu and one hospital at a time; one city and one country at a time. this is the only way to create the necessary change. the medical visitors to this nicu were taken “on tour by the medical director,” while the nurses stepped out of the way. as there were no explicit rules for psychologists, i took the liberty to look and smile at the nurses. they gathered quickly around me, and despite our language barrier, they clearly were eager to learn why i was there. in just a few minutes we stood together at a bedside and watched a little boy, who was severely growth restricted, lay flat on his back, flailing his arms, his shoulders retracted and pulled high up to his ears. he arched and screamed in utter despair with his mouth wide-open, ashen grey despite his arousal. i gestured that he might enjoy being tucked in and have something to suck on. the nurses shook their heads in sadness. he was not allowed to eat now. i tried to convey that sucking might help even without food. they looked at me, incredulous. they had never heard of pacifiers and the hospital had none. with gestures and mime, one nurse understood the concept and went to fetch a nursing bottle. we fashioned a pacifier out of the nipple and stuffed it with a piece of cotton cloth. “now what?” they seemed to ask. when i then supported and guided one of the nurses to open the incubator and gradually place her hands around the infant’s feet and legs and speak to him softly, then gather his hands in her hands, this helped his shoulders to relax, and he gradually looked at the nurse and calmed somewhat. when i now guided her to help him onto his side and to cradle him with her right arm, she spontaneously, with her left hand, supported his grasp, and all the while she spoke very softly to him, her eyes became shiny, her face soft and caring. the other nurses stood and watched, astounded and taken by the little boy’s visible transformation in interaction. one nurse went to get some more of the cotton cloth and we made a soft cradle roll to support the little boy along his back. the nurse engaged with him, gently took the makeshift “pacifier” we had made, and held it close to the infant’s lips. while still crying softly, he grasped the pacifier with both hands and pushed it into his “each infant and each family count. each infant and each family are valuable. but where to begin? anywhere is better than not at all: one infant and one family at a time; one nurse and one doctor at a time; one nicu and one hospital at a time; one city and one country at a time. this is the only way to create the necessary change.” 2022 • developmental observer • 25 the engagement in research is thought to be addictive; and indeed it shares many characteristics with other addictive agents and activities. why else would a researcher forgo most of life’s common comforts, a decent income, the small luxuries of evenings at home, free weekends, winter vacations in the sun, and social events shared with friends just for the sake of having fun? the researcher is jealous of every minute frittered away in idleness when it might be spent in pursuit of the elusive goal, the holy grail, the finding of a momentary “truth,” the discovery of yet another small aspect of the bigger mosaic of an emerging pattern, regularity, the all-consuming passion. the drive is great. yet so is the simultaneous fear that must be contained, if one is not to succumb to self-doubt. is the pattern really there? is it too elusive to be captured; too trivial to be meaningful; too multi-dimensional; too variable, too dependent on too many uncontrollable aspects that blur its shape, or make it vanish all together? the seeds of doubt germinate unexpectedly at any time, sprout in the middle of the night; cause the poor scientist to wake up despondent, questioning the clarity of earlier thought, and the thought itself. the feeling of futility, of chasing an illusion, is familiar to everyone engaged in the pursuit of scientific discovery. yet all it takes to overcome it, gain new hope, regain urgency and momentum, and the energy to press on, may be a validating comment, or a mere glimpse of evidence, a fleeting promise that the pattern, the heretofore elusive phenomenon, in pursuit of scientific knowledge: the passion of discovery message from the nfi president from the developmental observer 2009, volume 3, number 2 “you are capable of more than you know. choose a goal that is right for you and strive to be the best, however hard the path. aim high. behave honorably. prepare to be alone at times, and to endure failure. persist! the world needs all you can give.”1 mouth, sucked like fury, and looked with wide eyes directly at his nurse. she in turn was glued to him and kept her eyes on him. her hand cradled his body and she slowly covered him gently with another cloth that her colleague miraculously produced. the little boy gradually calmed and drowsed off to sleep, as the pacifier dropped out of his slightly parted, relaxed lips. very gently the caregiving nurse pulled her hands one by one out of the incubator and softly closed its doors. her face, her posture and her whole being had changed, becoming soft, fluid, and caring. the nurses crowded in on me. how can they learn more? how will they convince the doctors to help them learn more? how will they bring in the mothers and fathers? the bravest of the nurses, who had just helped the little boy, confided with tears in her eyes that she had smuggled the father of one of the infant’s into the nicu several times in the evening, when she felt it was safe. she had observed what it meant to the infant to have his father talk to him and even briefly hold him. no wonder she was so open to try the next step under the guise of my visit. this is but a tiny yet important seed in the beginning of a garden. i am convinced that with the courage to trust in ourselves, in the infants, in the parents and the staff of nurseries everywhere, we will multiply trust, courage, creativity, and generosity and the effectiveness to bring about change on behalf of infants, families and professionals in intensive care everywhere. political agendas are made and carried by people. people all share in the same basic human heritage of empathy, caring, and responsibility for one another. nidcap must be a spark and an initiative that helps make the thousands of seeds of opportunities, to swell, sprout, and grow, even when seemingly buried deep in arid soils. together we are strong and will continue to forge an agenda of national and international change and growth. heidelise als, phd “research is the cyclical and ultimate exercise and practice of year-and often decade-long delay in gratification.” 26 • 2022 • developmental observer is about to reveal itself. that brings with it elation, and the endorphin release, that makes the struggle all worthwhile and simultaneously launches the next push. “there is no better high than discovery.”2 the verification of the dreamed for pattern, the good enough probability, the significant p-value, that emerges from a rigorous design and statistical test, will release a neuro-hormonal cascade that floods brain and psyche with that wonderful feeling and rush: “that’s it! it fits! it’s so! eureka! how might anyone ever have doubted it?” no sooner does the brain experience that neuro-euphoria, likely evolved through the millennia, and species-specifically human, when the newly uncovered regularity already pushes to conquer and penetrate the next still amorphous state to reveal its underlying structure, its “truth.” and so the cycle continues. as soon as results indicate that what began with a hunch discloses itself as indeed orderly, possesses a reproducible and meaningful pattern that may be articulated and communicated; as soon as the validation of one’s intuition, one’s best clinical judgment, takes the form of replicability, the researcher feels fulfilled, gratified, and happy, at least in the moment. research is the cyclical and ultimate exercise and practice of year-and often decade-long delay in gratification. each many-year cycle begins with an intuition, an insight, a flash, associated with that pleasurable, scary, neurophysiological feeling of anticipation and promise. from there it evolves to fuller articulation. this is followed by the struggle to design an “airtight” trial to test the intuition’s worthiness, and to think of and build in all the controls for all the possible (i.e., currently imaginable) factors that might invalidate the thought. it goes without saying that these factors always are more numerous than ever imagined. by the time they emerge in the process of the trial, it likely is too late to bring them under control. they may well force a redesign and restart. once the variability within the sample is greater than the variability expected due to the phenomenon under study, the trial is jeopardized, perhaps doomed. the researcher must be brave enough to fail. assuming the trial is set to go, next follows the quest for the resources required to conduct the trial, which means to inspire those in possession of the means to share their resources with the dreamer, the applicant. “normal science”3 may prefer to distribute resources and funding to those who validate the known, the status quo, well-accepted truths, rather than pursue novel thoughts that might raise uncertainty and discomfort. and finally the time arrives for trial implementation. the hardest lesson the researcher learns, often painfully and at great cost, is that conducting a trial requires that the current design and methodology (i.e. the best knowledge at the time the trial goes forward), must be held constant until the trial’s completion. inevitably, in the course of any study, the researcher learns a great deal in how to improve on procedures and methodologies, avoid pitfalls not recognized in the beginning, add missing components, etc. yet modification of any aspect mid-stream may well invalidate the trial. it is better to do something reliably and systematically, if less than perfect, than to adapt and adjust, as one moves along the path of a trial. a systematically implemented study will yield interpretable results. a “moving feast” will yield regret and confusion and belongs in the development and pilot phase, instead of the trial itself. most research trials require collaborators beyond the initiator with the burning question, the principle investigator. unless the leader is compelled by an urgent mission to uncover the phenomenon under study, he or she may fail to convince the others of its merit, the worthwhile nature of the knowledge to be gained, and the benefit of participation. it behooves the researcher to identify that the benefit outweighs the cost for those important to the trial. of all the collaborators, one’s research subjects are one’s most important, most valuable and most precious assets. shared benefits secure successful research conduct. to conduct research is often a lonely yet always an exhilarating path that prompts one to confirm and stand up again and again for what one holds most important in one’s work and perhaps even one’s life. it tasks others to poke holes, and raise questions, doubts and criticism, which in turn serves to sharpen the researcher’s thinking and rigor in designing and conducting the next study. when the new discovery, or insight ultimately prevails, and brings about the inevitable sea change engendered by a worthwhile finding, the next status quo, the new “business as usual” is in the offing and thus paves the way for the next revolution. research conducted for the sake of insight and knowledge to better the state of humanity and the world will always be fulfilling, satisfying and enriching.2 heidelise als, phd references: 1. wilson e. on human nature: revised edition: harvard university press; 2004. 2. wilson e. consilience: the unity of knowledge: random house; 1998. 3. kuhn t. the structure of scientific revolutions. chicago: university of chicago press; 1970. “first they laugh at you, then they fight you, and then they say they knew it all along.” – mahatma gandhi 2022 • developmental observer • 27 jazz has a spontaneity and vitality in which improvisation plays a role. the individuality of the performing jazz musician plays a key role.1 travis jackson states that jazz is music that includes qualities such as improvising, group interaction, developing an individual voice and being open to different musical possibilities.2 in jazz, the performer will interpret a tune in very individual ways, never playing the same composition exactly the same way twice. depending upon the performer’s mood and personal experience, interactions with fellow musicians, or even members of the audience, a jazz musician may alter melodies, harmonies or time signature at will. jazz, is often characterized as the product of egalitarian creativity, interaction and collaboration, placing equal value on the contributions of the composer if there is one, and the performer, and adroitly weighing the respective claims of the composer and the improviser. similarly this is the case in nidcap at its best. a nidcap nursery is a setting where interactions among equals make a harmonious and always evolving whole, exhilarating to behold and affirming to experience. while analogies are doomed to fall short in most cases, contemplation of the differences between jazz and classical music may be helpful when tempting to grasp and appreciate the differences between a traditional nursery and a nidcap nursery. in classical music the composer sets the direction and rules. the players in the performing orchestra make every effort to play the written music as true to its notation as their talents permit. yes, there may be slight differences in phrasing from one orchestra to another and one conductor to another, yet a specific piece of classical music is recognizable wherever it may be played. playing classical music draws attention to flawlessness, virtuosity, and accuracy and highlights mistakes. it may serve as a metaphor for the nursery that is guided by a set of protocols, reinforced by hierarchical leadership, and recognizable as such from location to location. perhaps its size, underlying tempo and complexity might vary, the number of players differ. yet the piece played is the same. a nidcap nursery is more like a piece of jazz music. playing jazz draws attention to creativity, give and take, and relationship. it is a nursery with an interactive individuality that is recognizable in the way that jazz music is easily recognizable as jazz; yet each set played is unique, new and different, developed each time in its dynamics and harmonies, solos and resolutions depending on the individuality and relationship of voices with one another of those playing together. each player trusts the other; the interplay is the essence rather than the goal. the infants and families set the themes, as it were, that penetrate and are returned to over and over again, no matter the crescendo of surrounding voices and themes of the staff. around the infant and family themes the contra-points surge and are resolved again and again yet differently each time. this makes it a challenge to move from a traditional to a nidcap nursery. it may be as difficult as moving from being an accomplished classical musician to becoming a jazz musician. as nidcap trainers teaching, guiding and helping nurseries, i.e. complex jazz ensembles, to come into their own, to trust themselves as partners, trust their interplay and continuof jazz, nidcap and the process of becoming message from the nfi president from the developmental observer 2012, volume 5, number 2 “men are wise, not in proportion to their experience, but in their capacity for experience. this is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being a force of nature…i am of the opinion that my life belongs to the whole community and as long as i live it is my privilege to do for it whatever i can. …. the harder i work, the more i live. i rejoice in life for its own sake.” – g. b. shaw, man and superman: a comedy and a philosophy. epistle dedicatory to arthur bingham walkley. penguin books, 1958. p18. ”as nidcap trainers teaching, guiding and helping nurseries, i.e. complex jazz ensembles, to come into their own, to trust themselves as partners, trust their interplay and continuously become anew, and create themselves, trainers must have trust and confidence themselves as well as patience and vision.” 28 • 2022 • developmental observer ously become anew, and create themselves, trainers must have trust and confidence themselves as well as patience and vision. teaching the other the basic nidcap ingredients and tools is essential until these ingredients are mastered and have become second nature. such ingredients include among others, astute observation of the interplay of the social and physical environments and the individual infants’ behavior; tuning of writing to convey information that retains the emotional dimension of the interactions observed; deriving of specific and guiding interpretations that engender creativity in developing suggestions for next steps; and attunement and emotional presence to become astute in listening and proactive guidance. once these are achieved and a sufficient core of such basic skills is available the transformation process from the traditional to the nidcap nursery is inevitable. moving forward and creatively becoming is the emerging new theme. much has been written about the process of change and the ways it may be facilitated. the nidcap trainer’s role becomes that of imparting the confidence that everyone counts and is accountable as individual for who he or she is. that presents the teacher’s opportunity and yet also the main challenge. to paraphrase sanford meisner3: the nicu is “an arena where human personalities interlock in the reality of doing.” the “elements in a person’s training that will make him [or her] a distinctive… [nidcap professional] are… the most delicate factors that a teacher can impart.….one can use standard principles and textbooks in educating people for law, medicine, architecture, chemistry or almost any profession – but not for [nidcap]. for in most professions every practitioner uses the same tools and [techniques] while the [nidcap professional’s] chief instrument is himself [or herself] and since no two persons are alike, no [universal] rule is applicable to any two [persons] in specifically the same way.” nidcap training is ultimately only successful in the oneto-one shaping and tuning of teacher and student. the nidcap nursery certification criterion scales (nnccs)4 provide a kind of script, a loosely assembled accumulation of themes, sketched for consideration and contemplation of those invested in the care of infants and families in the nicu. they are far from a prescription, textbook or detailed ‘how to’ manual. rather they represent a vision, a set of themes pictured from various angles and vantage points. once sampled, they are intended to become the intriguing impetus and catalyst for the nicu, to tune to and be realized into a live process of continued becoming. thus the timing of the introduction to this collection of themes and sketches poses a delicate issue for the teacher; that the players have come to embrace the realization of the dynamic nature of the process of nidcap and of themselves as the agents and instruments in the process, likely is an important prerequisite. the players’ intrigue and fascination with the promised beauty of the whole to be created as their own is the motivation best suited for the timing. confidence to get to the level of active daily becoming is the threshold when success is assured. heidelise als, phd references 1. berendt je. the jazz book: from ragtime to fusion and beyond. 1981. lawrence hill books. 2. jackson t. jazz and musical practice. in d. horn & m. cooke (eds.), the cambridge companion to jazz. 2002. cambridge: cambridge university press. 3. meisner s, & longwell d. sanford meisner on acting. 1987. new york: random house. 4. smith k, buehler d, & als h. nidcap nursery certification criterion scales. 2009. (unpublished manuscript). boston: copyright, nidcap federation international. issn: 2689-2650 (online) all published items have a unique document identifier (doi) the official publication of the nidcap federation international published on-line three times a year. ©2022. the statements and opinions contained in this publication are solely those of the individual authors and contributors and not necessarily of the nidcap federation international. articles from the developmental observer, duly acknowledged, may be reprinted with permission. please contact us at: developmentalobserver@nidcap.org. contributions we would like to thank all of our individual donors for their generous support of the nfi and its continuing work. developmental observer current and past issues from: https://scholarworks.iu.edu/journals/ articles are welcome for peer review and may be submitted via the scholarworks site or send directly to the senior editor. the submission guidelines are available on the scholarworks site. developmental observer 2022 • developmental observer • 29 we all know the challenge of supporting nurseries to become calm and quiet places where an infant may hear the soft comforting murmur of the parents’ voice speaking or singing. the deleterious effects of high levels of “noise” in nurseries, toxic to all, infants, families and staff alike, are undisputed. it is all the more important, therefore, to meet the challenge we face in the nursery by first becoming steady and trustworthy sources of calm and quiet ourselves. finding and maintaining the silence within so that we may assist others is a continuing process and often a real struggle. our environment is polluted with sound, taxing and toxic to our well-being. what is it about humans that making noise is such a pervasive phenomenon? our car doors beep when we open them and again when we close them; beeps remind us to take action with our seatbelts, washing machines and coffee maker alarms. pedestrians walk about with ear buds that pipe music or podcasts, often loud enough for others to hear, directly into their ears and brains. waiting rooms are pervasively equipped with television sets often set at high volume levels and non-adjustable. airports, already oppressive with loudly rattling and clanking luggage carousels, provide travelers with continuous announcements and television newscasts set to increase in volume automatically when a plane arrives and passengers come through the gate into the waiting halls. we attempt to be heard in conversation by speaking at high volumes against this background din. neighborhoods and whole towns complain about the noise pollution from commuter trains, truck and bus routes; some even must endure life beneath the flight paths of local airports. communities insist on highway walls to gain at least a psychological protection. every so often when it becomes all too much, we attempt to regain our balance, “flee into nature,” leaving our electronic devices behind to refresh ourselves, or so we hope, in the quiet and silence of a forest, the mountains, a lake or the ocean. nature’s sounds differ remarkably in their effects on us from the sounds we generate through our technological advances. we fail to recognize this disconnect and as a result our industries spend too little effort on designing and producing psychologically friendly, that is, quiet equipment. too little aware of our deeply rooted biological vulnerability, we attempt to overcome our sub-cortical responses by cortical override. while our brains have developed impressive habituation mechanisms, this habituation comes at a high cost and this cost often takes us unawares. at the beginning of every summer my family and i take our first hike of the season up little deer leap in central vermont. it is a grade-3 hike, which takes about an hour and a half up. it is well worth the beautiful view of pico peak, the north face of mount killington, the coolidge range, and the sherburne pass. while we walk, after leaving the car at the trail head, the woods become ever quieter; our steps stir up leaves and an occasional rabbit or partridge. the wind’s rustle in the trees is soothing and familiar. yet, finally at the top, looking forward to the rest and view, i am always disappointed, remembering the reason for my annual, yet quite ineffectual, resistance to this particular climb. a strange distant rumbling permeates the quiet. my husband and the children respond to my discomfort by asking: “what rumbling?” to which i reply “can’t you hear the traffic way down on route 4.” edging to the ledge drop, we see it down in the valley, the ant trail of cars up and down the highway. in vain, i attempt to tune out the sound. everyone else seems to delight in nature’s peacefulness. “one square inch of silence” hardly a place remains in the world that is truly silent, still, tranquil. this, almost spiritual quality, is necessary for silence of the mind, an inner peace and a clearing of our pressing thoughts and preoccupations. to “hear silence,” brings openness, inner quietude, an attunement to nature’s sounds, and to our inner selves. there are fewer than a dozen quiet places left in the us, places where natural silence reigns over several square miles. quiet is now measured in minutes, the number of minutes of the importance of silence message from the nfi president from the developmental observer 2015, volume 8, number 1 “eloquium est argentum; silentium est aurum.” (speech is silver, silence is gold.) –old roman saying “don’t speak until you can improve on the silence.” –attributed to henry simmons, md, mph, facp, 1990 “nature’s sounds differ remarkably in their effects on us from the sounds we generate through our technological advances.” 30 • 2022 • developmental observer the absence of noise encroachment. a silence of 15 minutes is extremely rare in the us and long gone in europe, except in the northern most regions of finland and norway1 (p 13). our ever higher consumption of fossil fuels and the technologies they promote translates into more and more noise pollution. “even far from paved roads in the amazon rain forest the drone from distant outboard motors on dugout canoes and from the beep from a digital watch of the guide”1 (p 13) intrudes on the sounds of nature. in the us, the national government protected parks provide the hoped for places of escape from the noise and bustle of everyday lives. gordon hempton, one of the few acoustic ecologists, has mounted a national campaign to protect at least “one square inch of silence” in the hoh valley in the olympia national park in washington state. he quotes william h. stewart, surgeon general (1965-1969) under l. b. johnson, “calling noise a nuisance is like calling smog an inconvenience”1 (p 207). air-tourism is on the increase. olympic national park is the most likely area in the us to retain its natural quietude due to almost continuous rain or overcast skies, reducing air tourism. yet even this pristine acoustic environment receives no special protection. tours on demands such as those offered by vashon island air advertise: “we fly past mount olympus and deep down into the valley of the hoh river, the only non-tropical rain forest in the world.” and not a single person on the park’s staff is trained in acoustic ecology. business and profits trump silence. how long will hempton be successful in protecting his “one square inch of silence?” by the time a single airplane’s sound has travelled far enough to dissipate below audible levels, many square miles have been polluted. and anyone seeking solace will feel disappointed, “unbathed” by the cleansing power of quiet. the omnipresence of anthropogenic sound sound resulting from the influence humans have on the natural world is termed anthropogenic sound. this sound is for the most part noise, i.e. sound that is loud and/or unpleasant or that causes disturbance; it may have irregular fluctuations that accompany a signal but are not part of it and tend to obscure it; it may be confused, senseless and it is always undesired. noise has become a modern plague found everywhere, at all times, and often at unsafe levels. it has become so prevalent that we take it for granted. it is so overlooked, and so systematically unmonitored that it is not included among the metrics that constitute more than 150 countries’ rankings in the environmental performance index (epi)2 (fig. 7, p. 18) annually issued by the yale university center of law and policy to monitor the protection of human health and the protection of ecosystems from environmental harm. nine issues with a total of twenty indicators are addressed: health impacts (child mortality); air quality; water and sanitation; water resources; agriculture (pesticide); forests (change in forest cover); fisheries (fish stock); biodiversity and habitat protection; and climate and energy. but noise pollution is not among them. meanwhile our cities grow more toxic with noise, and we “drift towards a nation of shouters. the sound of our footsteps has all but disappeared”1 (p. 322). archeo-acoustics this has not always been so. our world used to be much quieter. so quiet in fact that until recently anthropologists paid little attention to the acoustics of ancient environments, thus overlooking the implications and impact of such quiet daily living conditions. emergence of the novel fields of “acoustic anthropology” and “archeo-acoustics” reflects the increasing interest in this topic. steven j. waller, a biochemist and acoustic anthropologist by avocation, describes a natural occurring acoustic phenomenon appreciated by many early civilizations, which had been intentionally reproduced, to break the silence of earlier times, namely echoes. echo myths are found in many cultures, often attributed to supernatural entities,3 such as the native american tales of spirits who speak through portals in rock walls. these ancient myths show that echoes were widely worshipped as divine gods, were considered to be the “earliest of all existence” and were systematically sought out. when not found naturally, they were created. ancient builders designed subterranean soundscapes as stirring as any modern movie special effect. when priests at the temple complex of chavín de huántar in central peru sounded their conch-shell trumpets 2,500 years ago, tones magnified and echoed by stone surfaces seemed to come from everywhere, yet nowhere, supernatural and otherworldly. but there was nothing mysterious about their production. according to archaeologists at stanford university, the temple’s builders created galleries, ducts, and ventilation shafts to channel sound, displaying not only expert architectural skill but also acoustical engineering prowess.4,5 the findings add to a growing body of research suggesting that controlled natural sound was more important to our ancestors than archaeologists once realized. today we live in a less thoughtfully controlled sound-saturated society, full of ipods, thunderous special effects in movies, and thousand-watt boom car stereos. these modern acoustic environments result in sonic cacophony while our ancient ancestors may have sculpted their soundscapes in an attempt to reach the divine. until very recently, archaeology has been strictly visual.6 the acoustic studies at chavín de huántar and elsewhere show the value of broadening the field of archeology into acoustic archeology and helping us understand the roots of our manufactured sound world. the dangers of modern anthropogenic noise in stark contrast to the purposeful spiritual, even mystically intended sound phenomena, our modern day technology-generated pervasive sounds not only have little to do with the spiritual but are destructive. here a few examples. 2022 • developmental observer • 31 “where have all the songbirds gone?” is a popular lamentation of today’s bird watchers. the audubon watchlist in 2000 listed 25 species of us songbirds in decline; by 2007, 59 species were on the endangered list and an additional 119 species were listed as near endangered. climate change is a big issue and noise pollution goes hand in hand with climate change. increase in fossil fuel production underlies both. our landscapes are losing their voice. bird song-ranges are shrinking. birds have been found to adapt their songs so as to be heard above the din of rural and urban noise pollution. and whole song repertoires already have been lost. human activity has caused an, in evolutionary terms, sudden rise in, especially, low-pitched noise levels.7, 8 these frequencies are detrimental to birds through direct stress, masking of predator or associated danger calls, and by general interference with acoustic signals, which serve mate selection, offspring protection, and territory defense. significantly reduced reproductive success has been documented in noisy territories.9, 13 similarly toxic noise effects have been documented in oceans where they affect large mammals such as dolphins and whales. oil industry’s seismic explorations and drilling, the low rumble of the ever growing number of commercial ships and, likely most harmful, military sonar, have been implicated in the increasingly high number of dolphin and whale strandings and deaths. despite these concerns all efforts to modify or eliminate, especially military sonar emissions, have been overruled by presidential decision claiming paramount security interests of the us.14, 16 the word “noise” stems from latin nausea, meaning disgust, annoyance discomfort, and literally seasickness. the later old provencal nauza refers to quarrel. for humans noxious sounds and smells are impossible to ignore, processed by sense receptors which have evolved specifically to protect us from toxins. while we have passed odor laws, we are slow to acknowledge the need for noise pollution laws. william stebbins17 points out that in the course of evolution mammals capitalized on the sense of hearing more than any other vertebrate or invertebrate group. the range of human hearing far surpasses the requirements to hear spoken language or even to appreciate music. human hearing graphed by frequency range and decibel level shows that human speech encompasses the center of the range. sounds produced by musical instruments and appreciated by the human ear extend well beyond the human vocal range. yet even beyond the sound range of our musical instruments there are many sounds, namely natural sounds that the human ear is capable of perceiving. human hearing is exquisitely sensitive. moreover, the human hearing mechanism is always turned on.18 after humans have habituated to a sound, and even in sleep, the human body nevertheless responds to noise. the elicited nervous system, hormonal and vascular changes, the fight or flight response, has far reaching consequences. noise, even at levels that are not harmful to hearing is perceived subconsciously as a danger signal, alerting epinephrine, nor-epinephrine and cortisol level secretions.19 and loud enough noise leads to hearing loss: the world health organization (who) based on the work of berglund and lindvall20 among other research, recommends that unprotected exposure to sound levels greater than 100 db, (jackhammers, snowmobiles), should be limited in duration (4 h) and frequency (four times/yr). the threshold for pain is usually given as 140 db (boom-cars). adults should avoid exposure to impulse noise (gunfire and other intense brief bursts e.g. from firecrackers, cap pistols, and other toys) above 140 db with a limit of 120 db for children. exposure may result in sudden and permanent hearing loss. levels greater than 165 db, even for a few milliseconds, are likely to cause acute cochlear damage. as stated by the league for the hard of hearing: “ears do not get used to loud noise they get deaf.” even when not leading to hearing loss, noise pollution interferes with spoken communication. by affecting language comprehension it may lead to a number of disabilities and behavioral changes such as problems with concentration, fatigue, uncertainty, lack of self-confidence, irritation, misunderstandings, decreased working capacity, disturbed interpersonal relationships, stress reactions and increased aggression. some of these effects may lead to increase in the frequency of accidents, disruption in the classroom, and impaired academic performance.20-22 particularly vulnerable groups include children, the elderly, and those not familiar with the spoken language.23 despite the evidence of the medical, social, and economic effects of noise, including those incontrovertibly resulting from sleep disturbance, noise pollution is increasing in our cities. it impairs the ability to enjoy one’s property and leisure time and increases the frequency of antisocial behavior. noise makers and the businesses that support them are as reluctant as smokers to give up their bad habits. it is clear from the statistics on reduction of smoking, that laws can change undesirable behavior; laws could also change noise reduction in ways that would benefit society as a whole. the urgent importance of chosen silence as a direct response to the continuous auditory assault, many are choosing to offset the toxic effects with chosen silence, “for humans noxious sounds and smells are impossible to ignore, processed by sense receptors which have evolved specifically to protect us from toxins.” 32 • 2022 • developmental observer be it through yoga, retreats, meditation or other silent practices. historically, chosen silence has been linked to religious practice such as the vows of silence taken by christian monastic orders and also known as mauna [the silent one] in hinduism, jainism, and buddhism. examples from antiquity are pythagoras of samos (circa 570 – circa 495 bc), the ionian philosopher and mathematician, who imposed a strict rule of silence on his disciples; in ancient roman religion, the vestals or vestal virgins (circa 720 – circa 380 bc), priestesses of vesta, goddess of the hearth, also were bound to severe silence for long years. prophets have gone into the wilderness for long periods of silence and meditation. christian religious orders such as the benedictines, cistercians, trappists, carthusians, and carmelites incorporate silence to this day as one of the essential rules of their communities. other examples are days of silence such as good friday in the catholic tradition or the sabbath in judaism, intended to promote better understanding of and dedication to a higher being, to achieve enlightenment. often such religious or spiritual accounts accept “ineffability” i.e. the effects of such silence cannot be readily expressed in words. true mystics and hermits of both western and eastern traditions typically have little to say about their experience of silence. for instance, the biographer vicky mackenzie24 reports that jetsunma tenzin palmo, a british buddhist nun, who spent three years high in the himalayas in radical silence, publically said only: “well, it was not boring.” since the 18th century there are more secular sources of silence stories. the romantic movement writers like william wordsworth and henry thoreau, while theist in their understanding yet militantly non-religious, emphasized the value of nature and silence. onward from the mid-nineteenth century many accounts speak of lone adventurers, explorers of remote areas, mountain climbers, solo sailors, hikers, even swimmers, solitary by choice, they seek silence and remove themselves from their social day to day environments. they also largely tend to be mute about their inner emotions as if it defeats the very nature of their experience. in “a book of silence” sara maitland25 reports an extraordinary example referring to the sunday times sponsored, first “golden globe” race in 1968, of sailing single handedly nonstop around the globe (pp. 43-45). two experienced solo-yachtsmen, robin knox johnson and bernard moitessier independently from one another and the times “golden globe” race had already decided and prepared to navigate the globe. the race therefore was framed such that it was impossible not to enter, by default making both participants. moitessier announced that the very idea of such a “race” made him nauseous. he had made a “pact with the gods” in reparation for what he considered an earlier “dishonest” book that he had written. participation in the “race” would sully the whole enterprise. nine yachtsmen were entered in the race. only one finished, robin knox johnson. for all others it was not the sailing itself that proved the hurdle, no one was killed by the waves or the wind, but it was the emotional response to it. their will was altered by the silence and isolation. for instance, moitessier chose to round the cape of good hope a second time, headed back across the indian ocean from whence he had just come; on into the pacific, finally landing in tahiti. in his diary he wrote: “i really felt sick at the thought of getting back to europe…; does it make sense to head back for a place knowing that you will have to leave your peace behind?.… i feel a great strength in me. i am free, free as never before. joined to all nonetheless, yet alone with my destiny.”26 (p. 164),25 (pp. 56-57). this experience of strength and freedom is what maitland25 considers a common effect of such chosen silence. maitland describes a recognizable sequence of emotional experiences of being in silence, based on her review of many accounts by others and on her own six-week period of planned silence living alone in a small cottage on the isle of skye, the most northerly island of the inner hebrides of scotland. she recounts, that the first result is an extraordinary intensification of physical sensation, smells, taste, listening and hearing sounds such as the wind, the song of a bird, the experience of seeing color, the sensations of temperature, cold, wet, warm etc. sensations become direct and total. as maitland puts it: “it felt entirely now and physical”25 (p. 49). this then leads to an intensification of emotions, with crying, laughter, excitement, and anxiety quite disproportionate to the occasion, yet normal appearing at the time. next is the experience of disinhibition. those living in planned silence may abandon their daily routines of personal hygiene and customary dress codes as “banal vanities.” the public self becomes stripped away “leaving the true self naked” as arctic explorer and geologist augustine “onward from the midnineteenth century many accounts speak of lone adventurers, explorers of remote areas, mountain climbers, solo sailors, hikers, even swimmers, solitary by choice, they seek silence and remove themselves from their social day to day environments.” 2022 • developmental observer • 33 courtauld stated, having lived for five months in complete solitude in a tent on top of the greenland ice-cap27 in25 (p. 54). a third experience maitland25 describes is that of hearing voices, often perceived as helpful and joyous rather than worrisome or pathological, and apparently serving communication of one’s stressed self to one’s more optimistic self. additionally, natural sounds may become imbued with language-encoded meaning. the wind or ocean waves seem to be speaking or singing. pinker28 describes the “language instinct,” as the instinct to make sense of what one does not understand, a translation into language of non-language phenomena. our brain is an efficient interpreter of sound. as john cage,29 composer and music theorist, has said: “there is no such thing as ‘real’ silence. there is always some sound, even if it is only the sound that our body makes, our breathing, our heart beat.” finally, maitland speaks of the feeling of being given an incredible gift which she terms “givenness”25 (p. 62). it engenders an indescribable joy, a bliss, intense happiness that moves into a feeling of “oneness” and an extraordinary sense of connectedness, a connectedness to the universe, to absolutely everything25 (p.63), a feeling of communion and complete peace and certainty of being, without “pride or fear or surprise …where each thing is simple... free to the right, free to the left, free everywhere”26 (p. 164),25 in (p. 65). this gift of connectedness is both integrative and connecting the self to something larger, the world, the other. feelings of a loss of boundary between the self and the other, the self and the cosmos, even a sense of boundary confusion may occur at this stage. it may become harder to keep track of time, and track of danger. a certain exhilarating daring, almost a state of rapture may ensue, where everything appears feasible and delightful. maitland interprets it as a shaking off of the rules, boundaries and safety codes of daily life, of the culturally instilled protection from and fear of risk taking. such liberation seems freeing, induces joy and even giddiness, as a child might experience when taking a daring step. it engenders a “thrilling peril”; “a state of bliss that is simultaneously fiercely joyful” for which maitland25 (p. 74) uses the french term “jouissance,” a joy that bypasses the moderating and mitigating influences of reason, an “over the top,” unmitigated joy, as children experience quite naturally and that wordsworth bemoans because of its fleeting nature in his “ode: intimations of immortality from recollections of early childhood.”30 prolonged silence appears to help us regain this state of “exhilarating consciousness of being at risk, in peril”25 (p. 78), this sublime daring, even if only for limited periods. the ineffability of experience ties in with the feeling of bliss. the lasting benefits of planned silence experiences connect us back to ourselves and those around us, “without pride or fear or surprise” to use moitessier’s words. these are the personal attributes that our work as developmental professionals demands and expects of us. this is why the vulnerable infants and their families trust in us and our care. it is our professional responsibility to make room for such silence and its effects in ourselves, so that we can be ourselves fully. silence for years or months or even six weeks, as maitland chose, is unrealistic for most of us. yet the awareness of, and planned cultivation of the many moments of silence that offer themselves daily are feasible for all of us. the moment we pause in greeting a familiar bird, in watching a flower, observing a person, the pause of listening and tuning in, if only quite simply into our own breathing as meditation teaches us, this is well available to us all. and all of us have the power to cultivate actively an increased awareness of the intrusive, frequently gratuitous technology-based noise that we create ourselves. in doing so we can help to reduce and eliminate it; we have the power to educate, train and practice increased awareness of our often idle chatter, and our anxious over-talking to camouflage our fear of losing our public self, and “being naked”, our true selves. the practice of silence will give us the strength and the joy to hold the moment, and hold the other in the moment and in silence. being and becoming occurs in being held, being in the moment. are we prepared? heidelise als, phd acknowledgement: krista tippett’s interview with gordon hempton inspired me to write this column. the interview, entitled ‘the last quiet places silence and the presence of everything’, was aired as part of her national public radio (npr) program series ‘on being’. every so often when it becomes all too much, we attempt to regain our balance, “flee into nature”, leaving our electronic devices behind to refresh ourselves…in the quiet and silence of a forest, the mountains, a lake or the ocean. p ho to gr ap hy b y c hr is to ph er h op ki ns a ls d uf fy . 34 • 2022 • developmental observer in may this year i had the opportunity to have a conversation with dr. heidelise als in auckland, new zealand as she was the invited keynote speaker at the council of international neonatal nurses (coinn) 10th international conference. it was such an honour to have her speak and network with over 400 neonatal nurses from 23 countries. in a quiet corner of the hotel café we had a most enjoyable conversation. as heidelise sipped on her cappuccino she shared many stories, reflections and insights into nidcap and the impact it has on newborn infants and their families. i learned so much about this remarkable woman and the passion that has shaped her life. i would like to share parts of this conversation as i asked about her experience at the conference to trigger some thoughts about nidcap. ks: after three intense days at the conference would you like to share your overall impressions? ha: when i was invited and saw the conference theme, enriched family – enhanced care, i knew i wanted to attend. it was so in tune with the philosophy of nidcap. i was happy to see the concurrence of all strands of the presentations and the themes which were complimentary to nidcap. each presentation was well thought out; the presenters were articulate with a certain seriousness and sincerity. i found the science presenters were diligent in their longitudinal research, the follow-up years and the large numbers of infants was impressive. seeing the outcomes of our work causes us to pause and reflect. the nursery world is so different from the womb. it’s like witnessing the evolution of our own species and looking at it from the dr. als giving her keynote address at the council of international neonatal nurses (coinn) 10th international conference. references 1. hempton g, grossman j: one square inch of silence. one man’s quest to preserve quiet. new york: free press; 2009. 2. hsu a, emerson j, levy m, de sherbinin a, johnson l, malik o, schwartz j, jaiteh m: 2014 environmental performance index (epi), full report and analysis. in. new haven, ct: yale center for environmental law & policy; 2014: figure 7, page 18. 3. garfinkel ap, waller sj: sounds and symbolism from the netherworld: acoustic archaeology at the animal master’s portal. pacific coast archaeological society quarterly 2012, 46(4):37-60. 4. rick jw: the character and context of highland preceramic society. in: peruvian prehistory: an overview of pre-inca and inca society. edn. edited by keatinge rw. cambridge: cambridge university press; 1988. 5. rick jw: prehistoric hunters of the high andes. new york: academic press; 1980. 6. waller sj: intentionality of rock-art placement deduced from acoustical measurementsand echo myths. in: archaeoacoustics. edn. edited by scarre c, lawson g. cambridge, england: mcdonald institute for archaeological research; 2006: 31-39. 7. halfwerk w, bot s, buikx j, van der velde m, komdeur j, ten cate c, slabbekoorn h: low-frequency songs lose their potency in noisy urban conditions. proceedings of the national academy of sciences of the united states of america 2011, 108(35):14549-14554. 8. slabbekoorn h: the impact of anthropogenic noise on animals. in: elsevier encyclopedia online. 2010. 9. beecher md, medvin mb, stoddard pk, loesche p: acoustic adaptations for parent-offspring recognition in swallows. experimental biology 1986, 45(3):179-193. 10. beecher md: kin recognition in birds. behavior genetics 1988, 18(4):465-482. 11. stoddard pk, beecher md, willis ms: response of territorial male song sparrows to song types and variations. behavioral ecology and sociobiology 1988, 22:125-130. 12. medvin mb, beecher md, andelman sa: extra adults at the nest in barn swallows. condor 1987, 89:179-182. 13. templeton cn, akçay ç, e cs, beecher md: juvenile sparrows preferentially eavesdrop on adult song interactions. in: proceedings of the royal society of london: 2009; 2009: 447453 b. 14. international fund for animal welfare: breaking the silence how our noise pollution is harming whales. in. australia: international fund for animal welfare; 2013. 15. carey b: ship noise drowns out whale talk a threat to mating. in. lifescience.com; 2005. 16. convention on biological diversity: scientific synthesis on the impact of marine noise on marine and coastal biodiversity and habitats. in.; 2012. 17. stebbins w: the acoustic sense of animals. cambridge: harvard university press; 1982. 18. babisch w: noise and health. environmental health perspectives 2005, 113(1):a14-a15. 19. goines l, hagler l: noise pollution: a modern plague. southern medical journal 2007, 100(3):287-294. 20. berglund b, lindvall t (eds.): community noise. stockholm, sweden: stockholm university and karolinska university; 1995. 21. stansfeld sa, matheson mp: noise pollution: non-auditory effects on health. british medical bulletin 2003, 68(1):243-257. 22. etzel ra, balk sj (eds.): handbook of pediatric environmental health, 2nd edn. elk grove village, il: american academy of pediatrics; 2003. 23. evans gw, lepore sj: non-auditory effects of noise on children; a critical review. children’s environments 1993, 10:42-72. 24. mackenzie v: cave in the snow: bloomsbury publishing; 2011. 25. maitland s: a book of silence. london, great britain: granta books; 2008. 26. moitessier b: the long way: doubleday publisher; 1974. 27. wollaston n: the man on the ice cap: the life of august courtauld. london: constable & robinson limited; 1980. 28. pinker s: the language instinct: w. morrow and company; 1994. 29. cage j: silence: lectures and writings. middletown, ct: wesleyan publishing house; 1961. 30. wordsworth w: ode: intimations of immortality from recollections of early childhood. poems in two volumes, and other poems, 1800-1807. new york: cornell university publisher; 1983. in conversation with heidelise als interview with heidelise als by kaye spence, senior editor from the developmental observer 2012, volume 5, number 2 2022 • developmental observer • 35 outside. it was wonderful to hear the parents present; they have so much to teach us. ks: many of the delegates were impressed that you were in attendance for each session and you were taking notes. ha: why wouldn’t i? i have so much to learn. ks: what did you think of some of the futuristic presentations, for example the one on the artificial womb? i noticed you were quite absorbed. ha: i found it a thoughtful and sensitive presentation and the intellectual drive of the neonatologists and physiologists is impressive; they haven’t given up for nearly 50 years. this gives babies a chance, the more we learn the better we can make the experience for the newborn. you know i was present at some of those early trials in philadelphia. it was early in my career, around 1968 and i had come to the usa and had just completed my master’s degree. for my doctoral work i was in the nursery watching babies and doing pre-publication brazelton observations. i remember one of the pediatricians asking me what i was doing and i explained i was observing the baby. she asked if i would like to see babies more fascinating than the full-term infants i was observing; of course i was curious, so she took me into a room on the side of the nursery. the room was full of various equipment, oxygenators, monitors and, in the middle, a table for the immature baby, who was about 28 weeks pre-viable in those days. i was given the job of bagging the baby, who was flat on the table with the limbs restrained. i asked if we could help the baby tuck and place the hands to face and arms midline. as she spoke heidi took on the flexed position demonstrating the ideal position for the baby’s limbs and hands. she was demonstrating what she wanted to happen. i was told this was not possible as it could interfere with the tubes and wires! ks: did this influence you in any way on your early concept of nidcap? ha: yes, this was my first encounter with preemies. it made me think about their experiences and how they are looking for support and nurturing when surrounded by all the technology. developmental care and nidcap started. there were many challenges to getting these concepts into practice at the bedside and if you want to overcome those barriers you have to have the right persons. the psychologists have the ideas, but the doctors and nurses actually do it in practice. early on there were some real nursing champions (pat linton and gretchen lawhon) who were given the opportunity when developmental specialist positions were created. these were the early adopters, who helped make it happen, who made nidcap happen. ks: what to do you see as the impact of nidcap? at this conference as well as globally. ha: the number of nurses who spoke of their knowledge and awareness of my work surprised me. people seem hungry for information and they appear dedicated in using this for their interactions. you know this is only the second nursing conference to which i have been invited. the amount of research that has been accomplished is fantastic and there is an appreciation of the impact on the brain and the changes that occur. however, there remains a lack of recognition in one’s own local environment. this manifests in lack of support for development or research. in order for early intervention work to succeed, there must be support and this includes financial support. ultimately there are costs to the community, supporting families with babies who, early on, experienced less than optimal care and now require life-long support. ks: as one of the neonatologists said on the opening day – the nurses at the conference have a once in a lifetime opportunity at the conference to hear you speak. you received a standing ovation following your last presentation at the conference. how did this make you feel? ha: very humble. maria maestro’s beautiful video had a lot to do with it. ks: i think you gave many hundreds of nurses a glimpse of what nidcap is and the work and research that have gone into making it the model of choice. you also showed them that you are also prepared to have fun. did you enjoy the gatsby dinner? ha: yes, it was fun, but i can’t dance the way i used to. i enjoy watching the young people enjoy themselves. ks: what would you say is your ‘pearl’ of nidcap? ha: everything matters, for what we experience once we can’t do it over or change what has happened. we always make the best of what we experience, and nothing is without cost. we all make mistakes and if we reflect and think about it we will figure it out so it won’t happen again. i have learned a lot from being the mother to a child who was different from birth. there is a consciousness that makes life enjoyable, happy and good. a baby has no way to pretend, so you must consider how you touch a baby, work with a baby, and the voice you use, as these all have an effect on the baby and potentially cost the baby. you must be aware and keep your focus on the baby. ks: nidcap was born 40 years ago what do you see as the biggest change that has occurred for nidcap over the past 40 years? ha: awareness of nidcap varies greatly and depends on where you come from. there must be more articulation and communication about the detail required. for example, the reports cannot be condensed, as you want the detail that describes the core of the baby, the observations and the recommendations. the baby’s goals are essential for the report. there have been many changes and more are required. a psychologist developed nidcap and is free of the burden of keeping the baby alive. it is the doctors and nurses who implement 36 • 2022 • developmental observer nidcap in partnership with the parent. if nidcap is embraced by nurses the direction can quickly change, the nurses drive the change. we have the unifying umbrella of the nidcap nursery program (nnp) to help with the system change. this together with programs such as fine and nidcap will ultimately benefit the baby and the family. of course if we are going to have programs to support the baby and family we also must support the staff. they have to have time away from the bedside for time out, self-awareness and reflection; this is very important and has to be part of the implementation plan. globally, we are expanding and we must engage those drivers who are interested and prepared to embrace nidcap and respond to requests for training. i think we are still figuring it out. ks: thank you, heidi, this has been very enlightening for me. i must say the video you showed in your presentation really had an impact on the audience. to see all those interventions being done, eye exam, cardiac echo while the baby was skin-to-skin with little reaction was truly nidcap. ha: yes, maria maestro from spain allowed me to share this video. it shows how a neonatologist, who is a nidcap trainer together with a nidcap professional nurse, can provide these opportunities that embrace nidcap and ultimately benefit the baby and mother. ks: on that note, thank you for your generosity of time for this conversation. we said our farewells and i watched this diminutive and powerful woman walk towards the elevator. as she did so, a group of nurses walking by turned and chatted amongst themselves and i overheard ‘that was heidelise als, wasn’t she inspirational’. photo of h.als presenting courtesy of coinn. nidcap federation international board of directors and staff 2022–2023 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, rn, phd senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: dalia.silberstein@clalit.org.il apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: apoorva.sudini@pwc.com charlotte tscherning, md, phd division chief of neonatology, sidra medicine, doha, qatar email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 2022 • developmental observer • 37 additional global tributes to dr. heidelise als and her work “your way of being will always be in our thoughts” – natascia, gina, sandra, and all the nidcap professionals and staff from rimini, italy “such an amazing woman, teacher, and mentor” – dr. jeanne watson driscoll in boston, usa “we are better people and clinicians from knowing her” – nadine and the australasian nidcap training centre, nidcap australia “we rejoice in heidi’s amazing life achievements and the love and connection in the nidcap community” – stina, agneta, ann-sofi, björn, elisabeth and the swedish nidcap teams “her legacy of changing the futures of premature infants, and their families will live forever” – grace, laura and the latinamerican nidcap training center, argentina “i feel so privileged to have met her when she took the time to look around the nicu and congratulate us on the small achievements we had made” – aroha nui, dale garton, new zealand “heidi will be sorely missed but will live on in all that we do for the tiniest babies and their families” – juzer and the edmonton nidcap team, canada “her work and those early developmental conferences reshaped my nursing practice” – claire panke, nicu nurse and filmmaker in nyc, usa 38 • 2022 • developmental observer research investigations rivinus (als) h. evolution, newborn behavior and maternal attachment. comments on contemporary psychiatry. 1972;2:95-l04. katz sh, rivinus (als) h, barker w. physical anthropology and the biobehavioral approach to child growth and development. american journal of physical anthropology. 1973;38:l05-l08. tronick e, wise s, als h, adamson l, scanlon j, brazelton tb. the effects of regional obstetric anesthesia on newborn behavior over the first ten days of life. pediatrics. 1976;58:94-100. als h, tronick e, adamson l, brazelton tb. behavior of normal yet underweight newborn infants. developmental medicine and child neurology. 1976;18:590-602. als h, the newborn communicates. journal of communication. 1977;27: 66-74. als h, tronick e, lester bm, brazelton tb. the brazelton neonatal behavioral assessment scale (bnbas). journal of abnormal child psychiatry. 1977;5:3-10. tronick e, als h, brazelton tb. the infant’s capacity to regulate mutuality in face to face interaction. journal of communication. 1977;27:74-80. adamson l, als h, tronick e, brazelton tb. social interaction between a sighted infant and her blind parents. journal of the american academy of child psychiatry. 1977;16:194-207. tronick e, als h, adamson l, brazelton tb. the infant’s response to entrapment between contradictory messages in face to face interaction. american academy of child psychiatry. 1978; 17:1-13. brazelton tb, als h. four early stages in the development of mother-infant interaction. the psychoanalytic study of the child. 1979;34:349-369. tronick e, als h, brazelton tb. monadic phases: a structural descriptive analysis of infant-mother face to face interaction. merrill-palmer quarterly of behavior and development. 1980;26,1:3-24. als h, tronick e, brazelton tb. the achievement of affective reciprocity and the beginnings of the development of autonomy: the study of a blind infant. journal of the american academy of child psychiatry. 1980;19:22-40. telzrow rw, snyder dm, tronick e, als h, brazelton tb. the behavior of jaundiced infants undergoing phototherapy. developmental medicine & child neurology. 1980;22:317-326. als h, brazelton tb. a new model of assessing the behavioral organization in preterm and fullterm infants. journal of the american academy of child psychiatry. 1981;20:239-263. dixon sd, yogman mw, tronick e, adamson l, als h, brazelton tb. early infant social interaction with parents and strangers. journal of the american academy of child psychiatry. 1981;20: 32-52. lester bm, als h, brazelton tb. regional obstetric anesthesia and newborn behavior: a reanalysis toward synergistic effects. child development. 1982;53:687-692. als h. towards a synactive theory of development: promise for the assessment of infant individuality. infant mental health journal. 1982 winter;3(4):229-243. yogman mw, cole p, als h, lester bm. behavior of newborns of diabetic mothers. infant behavior & development. 1982;5:331-340. mintzer d, als h, tronick e, brazelton tb. parenting an infant with a birth defect: the regulation of self-esteem. the psychoanalytic study of the child. 1984;39:561-589. mintzer d, als h, tronick ez, brazelton tb. parenting an infant with a birth defect: the regulation of self-esteem. zero to three, the national center for clinical infant programs. 1985;5(5):1-8. als h. reciprocity and autonomy: parenting a blind infant. zero to three, the national center for clinical infant programs. 1985;5(5):8-10. als h. a synactive model of neonatal behavioral organization: framework for the assessment and support of the neurobehavioral development of the premature infant and his parents in the environment of the neonatal intensive care unit. physical & occupational therapy in pediatrics. 1986;6:3-55. als h, lawhon g, brown e, gibes r, duffy fh, mcanulty g, blickman jg. individualized behavioral and environmental care for the vlbw preterm infant at high risk for bronchopulmonary dysplasia: nicu and developmental outcome. pediatrics. 1986;78(6):1123-1132. als h, duffy fh, mcanulty g. behavioral differences between preterm and fullterm newborns as measured with the apib system scores: i. infant behavior & development. 1988;11:305-318. als h, duffy fh, mcanulty g. the apib, an assessment of functional competence in preterm and fullterm newborns regardless of gestational age at birth: ii. infant behavior & development. 1988;11:319-331. badian na, mcanulty gb, duffy fh, als h. prediction of dyslexia in kindergarten boys. annals of dyslexia. 1990;40:152-169. heidelise als bibliography 2022 • developmental observer • 39 blickman jg, brown er, als h, lawhon g, gibes r. imaging procedures and developmental outcomes in the neonatal intensive care unit. journal of perinatology. 1990;x:304-306. duffy fh, als h, mcanulty gb. behavioral and electrophysiological evidence for gestational age effects in healthy preterm and fullterm infants studied 2 weeks after expected due date. child development. 1990;61:1271-1286. duffy fh, jones k, bartels p, albert m, mcanulty gb, als h. quantified neurophysiology with mapping: statistical inference, exploratory and confirmatory data analysis. brain topography. 1990;3:3-12. badian na, duffy fh, als h, mcanulty gb. linguistic profiles of dyslexics and good readers. annals of dyslexia. 1991;41:221-245. als h. individualized, family-focused developmental care for the very low birthweight preterm infant in the nicu. advances in applied developmental psychology. 1992;6:341-388. duffy fh, mcanulty gb, jones k, als h, albert ms. brain electrical correlates of psychological measures: strategies and problems. brain topography. 1993;5:399412. mouradian l, als h. the influence of nicu care on motor functioning of preterm infants. the american journal of occupational therapy. 1994: 48:527-533. als h, lawhon g, duffy fh, mcanulty gb, gibes-grossman r, blickman jg. individualized developmental care for the very low birthweight infant: medical and neurofunctional effects, journal of the american medical association. 1994;272: 853-858. gilkerson l, als h. role of reflective process in the implementation of developmentally supportive care in the nicu. infants and young children. 1995;7:20-28. als h, gilkerson l. developmentally supportive care in the neonatal intensive care unit. zero to three. 1995;15:1-10. buehler dm, als h, duffy fh, mcanulty gb, liederman j. effectiveness of individualized developmental care for low risk preterm infants: behavioral and electrophysiological evidence. pediatrics. 1995;96:923-932. als h, duffy fh, mcanulty gb. effectiveness of individualized neurodevelopmental care in the newborn intensive care unit (nicu). acta paediatrica supplement. 1996;416:21-30. als h, gilkerson l. the role of relationship-based developmentally supportive newborn intensive care in strengthening outcome of preterm infants. seminars in perinatology. 1997;21(3):178-189. duffy fh, als h, mcanulty gb. infant eeg spectral coherence data during quiet sleep: unrestricted principal components analysis relation of factors to gestational age, medical risk, and neurobehavioral status. clin electroenceph. 2003;34:54-69. als h, gilkerson l, duffy fh, mcanulty gb, buehler dm, vandenberg k, sweet n, sell e, parad rb, ringer sa, butler sc, blickman jg, jones kj. a three-center randomized controlled trial of individualized developmental care for very low-birth-weight preterm infants: medical, neurodevelopmental, parent and care giving effects. j dev behav pediatr. 2003;24:399-408. pmid: 14671473. als h, duffy fh, mcanulty gb, rivkin mj, vajapeyam s, mulkern rv, warfield s, hüppi p, butler s, conneman n, fischer c, eichenwald e. early experience alters brain function and structure. pediatrics. 2004;113:846-857. rivkin mj, wolraich d, als h, mcanulty g, butler s, conneman n, fischer c, vajapeyam s, robertson rl, mulkern rv. prolonged t2* values in newborn vs adult brain: implications for fmri studies of newborns. magnetic resonance medicine. 2004;51(6):1287-1291. mouradian l, als h, coster w. neurobehavioral functioning of healthy preterm infants of varying gestational ages. developmental and behavioral pediatrics. 2000;21:408-416. mewes auj, hüppi ps, als h, rybicki fj, inder te, mcanulty gb, mulkern rv, robertson rl, rivkin mj, warfield sk. regional brain development in serial mri of low-risk preterm infants. pediatrics. 2006;118:23-33. mewes auj, zöllei l, hüppi ps, als h, mcanulty gb, inder te, wells wm, warfield sk. displacement of brain regions in preterm infants with nonsynostotic dolichocephaly investigated by mri. neuroimaging; 2007;36:1074-1085. almli cr, rivkin mj, mckinstry rc, and the brain development cooperative group*. the nih mri study of normal brain development (objective -2): newborns, infants, toddlers, and preschoolers. neuroimage. 2007;(35):308-325. (*member of investigative team listed a coinvestigator) waber dp, de moor c, forbes pw, almli cr, botteron kn, leonard g, milovan d, paus t, rumsey j, and the brain development cooperative group*. the nih mri study of normal brain development: performance of a population based sample of healthy children aged 6 to 18 years on a neuropsychological battery. journal of the international neuropsychological society. 2007;13(5):729-746. (*member of investigative team listed a coinvestigator) als h, butler s. newborn individualized developmental care and assessment program (nidcap): changing the future for infants and families in intensive and special care nurseries. early childhood services. 2008;2(1):1-19. 40 • 2022 • developmental observer leppert ir, almli cr, mckinstry rc, mulkern rv, pierpaoli c, rivkin mj, pike gb, and the brain development cooperative group*. t(2) relaxometry of normal pediatric brain development. journal of magnetic resonance imaging. 2009; 29(2):258-67. (*member of investigative team listed a co-investigator) pmid: 19161173; pmcid: pmc2767196. karama s, ad-dab’bagh y, haier rj, deary ij, lyttelton oc, lepage c, evans ac, and the brain development cooperative group*. positive association between cognitive ability and cortical thickness in a representative us sample of healthy 6 to 18 year-olds. intelligence. 2009;(37)145-155. (*member of investigative team listed a coinvestigator) pmid: 20161235; pmcid: pmc2678742. yoon u, fonov vs, perusse d, evans ac and the brain development cooperative group*. the effect of template choice on morphometric analysis of pediatric brain data. neuroimage. 2009; 45(3): 769-77. (*member of investigative team listed a co-investigator) als, h. newborn individualized developmental care and assessment program (nidcap): new frontier for neonatal and perinatal medicine. journal of neonatal and perinatal medicine. 2009; 2:135-147. huppertz cj, als h, koch l, poeschl j. frühzeitiges entwicklungsneurologisches screening frühgeborener kinder von geburt an. klinische pädiatrie. 2009;221:450-453. mcanulty gb, duffy fh, butler sc, parad r, ringer s, zurakowski d, als h. individualized developmental care for a large sample of very preterm infants: health, neurobehavior and neurophysiology. acta paediatrica. 2009:98:1920-1926. pmid: 19735497; pmcid: pmc409701. mcanulty gb, duffy fh, butler s, bernstein jh, zurakowski d, als h. effects of the newborn individualized developmental care and assessment program (nidcap) at age eight years: preliminary data. clinical pediatrics. 2010;49:258-270. pmid: 19448128; pmcid: pmc4097037. als h, duffy fh, mcanulty gb, fischer cb, kosta s, butler sc, parad rb, blickman jg, zurakowski d, ringer sa. is the newborn individualized developmental care and assessment program (nidcap) effective for preterm infants with intrauterine growth restriction? journal of perinatology. 2011; 31:130–136. pmcid: pmc4059409; pmid: 20651694 goldstein ferber sg, als h, mcanulty g, peretz h, zisapel n. melatonin and mental capacities in newborn infants. journal of pediatrics. 2011;159(1):99-104. pmid: 21315375 duffy fh, als, h. a stable pattern of eeg spectral coherence distinguishes children with autism from neurotypical controls – a large control study. bmc medicine. 2012, 10:64. pmcid: pmc3391175; pmid: pmc22730909. als h, duffy fh, mcanulty g, butler sc, lightbody l, kosta s, weisenfeld ni, robertson r, parad rb, ringer sa, blickman jg, zurakowski d, warfield sk. nidcap improves brain function and structure in preterm infants with severe intrauterine growth restriction. journal of perinatology. 2012; 32(10):797-803. pmid: 22301525; pmcid: pmc3461405. mcanulty gb, duffy fh, kosta s, weisenfeld ni, warfield sk, butler sc, bernstein jh, zurakowski d, als h. school age effects of the newborn individualized developmental care and assessment program for medically low-risk preterm infants: preliminary findings. journal of clinical neonatology. 2012; 1:184-194. pmid 23951557; pmcid: pmc3742017. mcanulty gb, duffy fh, kosta s, weisenfeld ni, warfield sk, butler sc, alidoost m, bernstein jh, robertson r, zurakowski d, als h. school-age effects of the newborn individualized developmental care and assessment program for preterm infants with intrauterine growth restriction: preliminary findings. bmc pediatrics. 2013; 13: 25. pmid: 23421857; pmcid: pmc3600990. duffy fh, eksioglu yz, rotenberg a, madsen jr, shankardass a, als h. the frequency modulated auditory evoked response (fmaer), a technical advance for study of childhood language disorders: cortical source localization and selected case studies. bmc neurology, 2013; 13:1-22. pmid: 23351174; pmcid: pmc3582442. duffy fh, shankardass a, mcanulty gb, als h, the relationship of asperger’s syndrome to autism: a preliminary eeg coherence study. bmc medicine, 2013;11:175. pmcid: pmc3729538; pmid: 23902729. duffy fh, shankardass a, mcanulty gb, eksioglu yz, coulter d, rotenberg a, als h. corticosteroid therapy in regressive autism: a retrospective study of effects on the frequency modulated auditory evoked response (fmaer), language, and behavior. bmc neurology, 2014, 2014; 14:70. pmid: 24885033; pmcid: 4022403. bastani f, rajai n, farsi z, als h. the effects of kangaroo care on the sleep and wake states of preterm infants: a randomized controlled trial. journal of nursing research, 2017; 25(3):231-239. pmid: 28481819. hasanpour m, alavi m, azizi f, als h, armanian am. iranian parent-staff communication and parental stress in the neonatal intensive care unit. journal of education and health promotion, 2017; 6:49. pmid: 28616416; pmcid: pmc5470302. 2022 • developmental observer • 41 duffy fh, shankardass a, mcanulty gb, als h. a unique pattern of cortical connectivity characterizes patients with attention deficit disorders: a large eeg coherence study. bmc medicine, 2017; 15(1):51. pmid: 28274264; pmcid: pmc5343416. a. ranger, e. helmert, t. bott, t. ostermann, als h, d. bassler, m. hautzinger and j. vagedes. physiological and emotional effects of pentatonic live music played for preterm infants and their mothers in the newborn intensive care unit: a randomized controlled trial. complement ther med. 2018 dec;41:240246. doi: 10.1016/j.ctim.2018.07.009. epub 2018 aug 1. pmid: 30477847. duffy fh, als h. autism, spectrum or clusters? an eeg coherence study. bmc neurology (2019) 19:27. pmid: 30764794; pmcid: pmc6375153. sefatbagha s, zahed py, hasanpour m., hajian – tilaki k, zarkesh mr, arzani a, als h. cue-based feeding and shortterm health outcomes of premature infants in newborn intensive care units: a non-randomized trial. bmc pediatr 22, 23 (2022). https://doi.org/10.1186/ s12887-021-03077-1 ferber sg, als h, mcanulty g, klinger g, weller a. multi-level hypothalamic neuromodulation of self-regulation and cognition in preterm infants: towards a control systems model. comprehensive psychoneuroendocrinology (2022), doi: https://doi.org/10.1016/j. cpnec.2021.100109. other peer reviewed publications rivinus (als) h. dot, a device for observational timing (note on instrumentation). developmental psychobiology. 1974;7:96. rivinus (als) h. brazelton neonatal behavioral assessment scale. proceedings on the conference on the diagnosis and management of the infant at risk. chapel hill: university of north carolina, 1974. als h, brazelton tb. comprehensive neonatal assessment. birth and the family journal. 1975;2:3-11. als h. assessing an assessment. in sameroff a (ed). organization and stability of newborn behavior: a commentary on the brazelton neonatal behavioral assessment scale. monograph of the society for research in child development. 1978;43:14-29. als h. social interaction: dynamic matrix for developing behavioral organization. in uzgiris ic (ed). social interaction and communication in infancy. new directions for child development. vol 4. san francisco: jossey bass, 1979; 21-41. brazelton tb, yogman mw, als h, lester bm. interazioni madre padre bambino. estratto da atti del iv congresso biennale della issbd international society for the study of behavioral development, aspetti biosociali dello sviluppo, vol. 1: aspetti medico-biologica, a cura di m. cesa-bianchi e m. poli, franco angeli, milano, 1979. brazelton tb, als h. vier vroege stadia in de ontwikkeling van de interactie tussen moeder en kind. psychotherapeutisch paspoort. 4, 1984. als, h. developmental care in the newborn intensive care unit. current opinion in pediatrics. 1998;10:138-142. als h, freschi m. identification clinique du stress chez le nouveau-né: application aux soins. medécine & hygiène. 2002;2379:343-345. als h. individualized developmental care for preterm infants. in tremblay re, barr rg, peters r, devries, l. eds. encyclopedia on early childhood development [online]. montreal, quebec: centre of excellence for early childhood development; 2004:1-7. available at: http://www.excellenceearlychildhood.ca/documents/ alsangxp.pdf als h, butler s, kosta s, mcanulty g. the assessment of preterm infants’ behavior (apib): furthering the understanding and measurement of neurodevelopmental competence in preterm and fullterm infants. mental retardation & developmental disabilities research reviews. 2005;11(1):94-102. smith km, butler s, als h. newborn individualized developmental care and assessment program (nidcap): changing the future for infants and their families in intensive and special care nurseries. italian journal of pediatrics. 2007;33:79-91. butler s, als h. a different view: individualized developmental care improves the lives of infants born preterm. acta paediatrica. 2008;97: 1173-1175. als h. commentary nidcap – testing the effectiveness of a relationship-based comprehensive intervention. pediatrics. 2009;124: 1208-1210. als h, cao y. [individualized neurodevelopmental care for the preterm infant.] chinese journal of evidence based pediatrics. 2010;15(4):241-244. als h, mcanulty g. the newborn individualized developmental care and assessment program (nidcap) with kangaroo mother care (kmc): comprehensive care for preterm infants. current women’s health reviews, 2011;7:288-301 (special issue). als h. the voice of the newborn. bulletin ndtswiss, 2013;54:22-25. reviews, chapters monographs and editorials brazelton tb, tronick e, adamson l, als h, wise s. early mother-infant reciprocity. in: parent-infant interaction. ciba foundation symposium. 1975;33:137-154. 42 • 2022 • developmental observer brazelton tb, tronick e, als h. newborn learning and the effect of appropriate stimulation. in: gluck l, editor. intrauterine asphyxia and the developing fetal brain. chicago: yearbook medical publishers; 1977. p. 443-453. brazelton tb, yogman mw, als h, tronick e. the infant as a focus for family reciprocity. in: lewis m, rosenblum la, editors. the child and his family. new york: plenum press; 1979. p. 29-43. tronick e, als h, brazelton tb. early development of neonatal and infant behavior. in: falkner f, tanner jm, editors. human growth, vol. 3. neurobiology and nutrition. new york: plenum press; 1979. p. 305-328. als h, tronick e, brazelton tb. analysis of face to face interaction in infantadult dyads. in: lamb me, suomi sj, stephenson gr, editors. social interaction analysis: methodological issues. madison, wi: university of wisconsin press; 1979. p. 33-77. als h, lester bm, brazelton tb. dynamics of the behavioral organization of the premature infant: a theoretical perspective. in: field tm, sostek am, goldberg s, shuman hh, editors. infants born at risk. new york: spectrum publications; 1974. p. 173-192. als h, tronick e, lester bm, brazelton tb. the brazelton neonatal behavioral assessment scale (bnbas). in: osofsky j, editor. handbook of infant development. new york: j. wiley; 1979. p. 185-216. tronick e, als h, adamson l. structure of early face-to-face communicative interaction. in: bullowa m, editor. before speech: the beginnings of interpersonal communication. cambridge, england: cambridge university press; 1979. p. 349-372. als h, tronick e, brazelton tb. stages of early behavioral organization: the study of a blind infant and a sighted infant in interaction with their mothers. in: field tm, goldberg s, stern d, sostek a, editors. high-risk infants and children, adult and peer interactions. new york: academic press; 1980. p. 181-204. tronick e, als h, brazelton tb. the infant’s communicative competencies and the achievement of intersubjectivity. in: ritchie r, editor. the relationship of verbal and nonverbal communication. new york: mouton publishers; 1980. p. 317-326. als h. the unfolding of behavioral organization in the face of a biological violation. in: tronick ez, editor. social interchange in infancy. baltimore: university park press; 1982. p. 125-160. als h, lester bm, tronick e, brazelton tb. towards a research instrument for the assessment of preterm infants’ behavior (apib). in: fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. 1. new york: plenum press; 1982. p. 35-63. als h, lester bm, tronick e, brazelton tb. manual for the assessment of preterm infants’ behavior (apib). in: fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. 1. new york: plenum press; 1982. p. 65-132. als h, duffy fh. the behavior of the fetal newborn: theoretical considerations and practical suggestions for the use of the apib. in: waldstein a, gilderman d, taylor-hershel d, prestridge s, and anderson j, editors. issues in neonatal care. chapel hill, nc: westar; 1982. p. 21-60. als h. infant individuality: assessing patterns of very early development. in: call j, galenson e, tyson rl, editors. frontiers in infant psychiatry. new york: basic books; 1983. p. 363-378. duffy fh, als h. neurophysiological assessment of the neonate: an approach combining brain electrical activity mapping (beam) with behavioral assessment (apib). in: brazelton tb, lester bm, editors. new approaches to developmental screening of infants. new york: elsevier north holland; 1983. p. 175-196. als h, duffy fh. the behavior of the premature infant: a theoretical framework for a systematic assessment. in: brazelton tb, lester bm, editors. new approaches to developmental screening of infants. new york: elsevier north holland; 1983. p. 153-174. als h. assessment, intervention, and remediation: the study of the development of a blind infant in interaction with her mother. in: mulholland me, wurster mv, editors. help me become everything i can be. proceedings, north american conference on visually handicapped infants and preschool children. new york: american foundation for the blind; 1983. p. 27-32. als h. assessing infant individuality. in: brown cc, editor. infants at risk. johnson & johnson pediatric round table v, 1981, piscataway, nj, johnson & johnson baby products co.; 1983. p. 24-31. als h, duffy fh. conceptualizing and assessing the behavior of the fetal newborn. in: slaton ds, editor. caring for special babies. chapel hill: university of north carolina press; 1983. p. 35-95. als h. newborn behavioral assessment. in: burns wj, lavigne jv, editors. progress in pediatric psychology, vol. 1. new york: grune & stratton; 1984. p. 1-46. duffy fh, mower g, jensen f, als h. neural plasticity: a new frontier for infant development. in: fitzgerald he, lester bm, yogman mw, editors. theory and research in behavioral pediatrics, vol. ii. new york: plenum press; 1984. p. 67-96. 2022 • developmental observer • 43 als h. patterns of infant behavior: analogs of later organizational difficulties? in: duffy fh, geschwind n, editors. dyslexia: a neuroscientific approach to clinical evaluation. boston: little, brown & co.; 1985. p. 67-92. als h. neurobehavioral development of the premature infant and the environment of the neonatal intensive care unit. in: avery me, first l, editors. pediatric medicine. baltimore: williams and wilkins; 1988. p. 125-129. duffy fh, als h. neural plasticity and the effect of a supportive hospital environment on premature newborns. in: kavanagh jf, editor. understanding mental retardation. research accomplishments and new frontiers. baltimore: paul h. brookes publishing co.; 1988. p. 179-206. als h. self-regulation and motor development in preterm infants. in: lockman j, hazen n, editors. action in social context. perspectives on early development. new york: plenum press; 1989. p. 65-97. als h, duffy fh, mcanulty gb, badian n. continuity of neurobehavioral functioning in preterm and full-term newborns. in: bornstein mh, krasnegor na, editors. stability and continuity in mental development. hillsdale, nj: lawrence erlbaum; 1989. p. 3-28. als h, duffy fh. neurobehavioral assessment in the newborn period: opportunity for early detection of later learning disabilities and for early intervention. in: paul n, editor. research in infant assessment. original article series vol. 25, no. 6. white plains, ny: march of dimes birth defects foundation; 1989. p. 127-152. duffy fh, als h. brain organization in infants: electrical activity mapping. in: paul n, editor. research in infant assessment, original article series vol. 25, no. 6. white plains, ny: march of dimes birth defects foundation; 1989. p. 33-46. als h. caring for the preterm infant. in: bottos m, brazelton tb, ferrari a, dalla barba b, zacchello f, editors. neurological lesions in infancy: early diagnosis and intervention. padova, italy: liviana editrice; 1989. p. 201-216. als h. continuity and consequences of behavior in preterm infants. in: von euler c, forssberg h, lagercrantz h, editors. neurobiology of early infant behaviour. wenner-gren international symposium series, vol. 55. hampshire, england: the macmillan press, ltd.; 1989. p. 87-106. als h. neurobehavioral development of the premature infant. in: avery me, first lr, editors. pediatric medicine. baltimore: williams and wilkins; 1994. p. 155-160. als h. the preterm infant: a model for the study of fetal brain expectation. in: lecanuet j-p, krasnegor na, fifer w, smotherman w, editors. fetal brain development: a psychobiological perspective. hillsdale, nj: lawrence erlbaum associates; 1995. p. 439-471. als h. behavior and pain management. in: fanaroff aa and klaus mh, editors. the year in neonatal and perinatal medicine. st. louis: mosby; 1995. p. 187-189. als h. earliest intervention for preterm infants in the newborn intensive care unit. in: guralnick m j, editor. the effectiveness of early intervention. baltimore: brookes publishing co.; 1996. p. 47-76. als h. neurobehavioral development of the preterm infant. in: fanaroff aa and martin rj, editors. neonatal-perinatal medicine (vol. 2). st. louis: mosby; 1997. p. 964-989. als h. reading the premature infant. in: goldson e, editor. developmental interventions in the neonatal intensive care nursery. new york: oxford university press; 1999. p. 18-85. als h. neurobehavioral development of the preterm infant. in: fanaroff a, martin r, editors. neonatal-perinatal medicine (vol. 1). st. louis: mosby; 2001. p. 947-972. als h, lawhon g. theoretic perspective for developmentally supportive care. in: kenner c, mcgrath jm, editors. developmental care of newborns and infants: a guide for health professionals. st. louis, mo: mosby; 2004. p. 47-59. fischer cb, als h. trusting behavioral communication: individualized relationship-based developmental care in the newborn intensive care unit a way of meeting the neurodevelopmental expectations of the preterm infant. in: nöcker-ribaupierre, m, editor. music therapy for premature and newborn infants. gilsum, nh: barcelona publishers; 2004. p. 1-20. als h, butler s. neurobehavioral development of the preterm infant. in: martin r, fanaroff a, walsh m, editors. fanaroff and martin’s neonatal-perinatal medicine: diseases of the fetus and infant. 8th ed. vol. 2, st. louis: mosby; 2005. p. 1051-1068. als h. looking back to the future. in: hedlund r, buehler d, lawhon g, editors. the developmental observer. vol. 1, number 1.boston: nidcap federation international; 2007. p. 1-2. als h. preparing to see and seeing. in: hedlund r, buehler d, lawhon g, editors. the developmental observer. vol. 1, number 2. boston: nidcap federation international; 2007. p. 3-4. als h, butler s. die pflege des neugeborenen: die frühe gehirnentwicklung und die bedeutung von frühen erfahrungen. in: brisch kh, hellbrügge t, editors., der säugling bindung, neurobiologie und gene. stuttgart: klett-cotta; 2008. p. 44 – 87. 44 • 2022 • developmental observer als h, butler sb, screening of newborn and maternal wellbeing. in: haith m, benson j, editors. encyclopedia of infant and early childhood development. vol. 3. amsterdam: elsevier; 2008. p. 66-78. als h. caring for the preterm infant: earliest brain development and experience. in: ramenghi la, evrard p, mercuri e, editors, perinatal brain damage: from pathogenesis to neuroprotection. montrouge, france. john libbey eurotext; 2008. p. 233-240. als h. the courage to trust. in: hedlund r, buehler d, lawhon g, editors. the developmental observer. vol. 2, number 2. boston: nidcap federation international; 2008. p. 3-4. smith k, buehler d, als h. the nidcap nursery certification program. in: hedlund r, buehler d, lawhon g, editors. the developmental observer. vol. 3, number 1. boston: nidcap federation international; 2009. p. 2-4. als h. in pursuit of scientific knowledge: the passion of discovery. in: hedlund r, buehler d, kosta s, lawhon g, editors. the developmental observer. vol. 3, number 1. nidcap federation international; 2009. p. 8-11. als h. the preterm infant: brain development, early experience and implications for care. in: lester bm, sparrow j, editors. nurturing children and families: building on the legacy of t.b. brazelton. blackwell scientific, wiley; 2010. p. 205-219. lawhon g and als h. theoretical perspective for developmentally supportive care. in: kenner c, mcgrath jm, editors. developmental care of newborns and infants: a guide for health professionals. 2nd ed. st. louis: mosby; 2010. p. 19-41. als h, butler s. neurobehavioral development of the preterm infant. in: martin r, fanaroff a, walsh m, editors. fanaroff and martin’s neonatal-perinatal medicine: diseases of the fetus and infant. 9th ed. st. louis: mosby; 2011. p. 10571075. als h. lamarck, darwin and the science of nidcap: epigenetics in the nicu. in: hedlund r, buehler d, kosta s, lawhon g, editors. the developmental observer. vol. 4, number 2. boston: nidcap federation international; 2011. p. 1-4. fischer cb, als h. was willst du mir sagen? individuelle beziehungsgeführte pflege auf der neugeborenenintensivstation zur förderung der entwicklung des frühgeborenen kindes. in: nöcker-ribeaupierre m, editor. hören brücke ins leben: musiktherapie mit frühund neugeborenen kindern. wiesbaden: reichert verlag; 2012. p. 19-39. als h. of jazz, nidcap and the process of becoming. in: hedlund r, buehler d, kosta s, lawhon g, editors. the developmental observer. vol. 5, number 2. boston: nidcap federation international; 2012. p. 1-2. als h. the importance of silence. in: hedlund r, buehler d, kosta s, lawhon g, editors. the developmental observer. boston: nidcap federation international, 2015; 8(1):1-6. als h. programa de evaluación y cuidado individualizado del desarrollo del recién nacido (nidcap) (the newborn individualized developmental care and assessment program: nidcap). in: basso, g. editor. neurodesarrollo en neonatología. intervención ultratemprana en la unidad de cuidados intensivos neonatales (neurodevelopmental care in neonatology. ultra-early intervention in the newborn intensive care unit). buenos aires: editorial medica panamericana. 2016. p. 83 – 103. als h. nidcap: the newborn individualized developmental care and assessment program. in: shao, xm, zhou wh and cao, y. editor. brain injury in the fetus and neonate. 2nd edition. 2017; shanghai scientific and technological education publishing house. isbn 9787-5428-2/r.443. in chinese. als h. trusting behavioral communication: individualized relationship-based developmental care in the newborn intensive care unit a way of meeting the neurodevelopmental expectations of the preterm infant. in: nöcker-ribaupierre, m, editor. music therapy for premature and newborn infants. dallas, tx: barcelona publishers; 2nd edition, 2019. p. 5-48. als h. das newborn individualized developmental care and assessment program (nidcap): ein pflegemodell zum schutz des fetalen gehirns. in brisch, k. h. editor. familien unter hoch-stress. beratung, therapie und prävention für schwangere, eltern und säuglinge in ausnahmesituationen. translated from english into german by ulrike stopfel. stuttgart: klett-cotta. 2019. p.73-100. als h. theoretical perspective for developmentally supportive care. in kenner c, mcgrath jm, editors. developmental care of newborns and infants: a guide for health professionals. 3rd ed. st. louis: mosby; in press. 2022 • developmental observer • 45 although times might be rough and difficult, with upheavals and waves to manage…hold on to your enthusiasm. hold on to your sunny and optimistic personhood. stay steady as much as possible and be tough. every child and family deserve it. natalie wetzel heidi has taught us the importance of observing and interpreting nonverbal language of preterm infants in a unique way. the opportunity we have every single time we interact with a newborn baby, to make things different, perhaps improving things for them in their relations with their family and caregivers. sant joan de déu hospital barcelona, spain her kindness, her way of being, speaking, her words and research inspire me… with heidelise i learned to be more sensitive to babies and families as well to my colleagues. so, if i would share a pearl that i learned with heidelise i think this summarizes all: trust babies and trust parents! elsa silva i was inspired by her always present curiosity and chase for knowledge. my very first live image of her is her sitting humbly in the first rows in a scientific meeting, taking notes and paying attention to each word pronounced. she... who mastered so much knowledge and had such deep insights... dalia silberstein heidi was and always will be my hero; she taught me how to help people and systems to change the outcomes for our tiniest citizens, and i have spent my career teaching and supporting developmental care and nidcap. i will be forever grateful. linda lacina her kindness, her time management, her compassion and sympathy, the way she cared to every single detail, and the way she articulated the words to make sure that the message was clearly understood, all will remain in my memory and will be a lifelong teacher along the way. patrick manibaho i learned love and kindness from her and whatever compassion and kindness i had in me, i mixed with her teachings and gave to babies who were defenseless in my hands and i knew for sure that my hands were created to be a safe place for those small miracles of god, so i did my best. heidi made me a more patient and kinder person. azadeh ranjbar we leaned our heads close to the incubator wall, saw a tiny baby resting in a nest and started looking for behavioral cues. heidi was whispering – explaining what the baby was “telling us”. i was amazed and felt –it was possible to see and understand the baby. agneta kleberg heidi has touched my life, making me a better person and a better professional. heidi has engaged me in a lifetime process of collaborative care with parents and professionals, safeguarding a quiet soothing environment for infants and family…changing the future for infants and families everywhere! fatima clemente remembrances 46 • 2022 • developmental observer a baby’s behavior is always honest and available to be observed and is therefore our anchor. if we are skilled enough to understand this behavior and open enough to believe and respond to what the baby is telling us, it is our guide to shape the baby’s relationships, environment, and care. bieke bollen remembrances dr. heidelise als inspires me in many ways…her smile brings you comfort… a leader with humility, great educator, strong woman…a mother of thousands of babies, her work and research, her patience and untiring nurturance to each and everyone…her humbleness…her intelligence and her strong stamina to nurture others and the newborns and their families. buenafe cala …the excitement and pure awe that i was actually going to be working with heidi, was incredible. too much to even put into words. completely surreal. she changed my life... literally. the complete trajectory of my path was changed by heidi, and i will forever be grateful and continue every day to be inspired by the incredible human being she was. bonni moyer heidi and her way of transmitting her knowledge with her warmth and magnetism, made me know who i really am as a neonatologist and what motivated my actions the most when i work with little patients. in my whole life she always occupied a privileged place. graciela basso professor heidi changed my eyes and view that premature babies should be treated as a human being and care should be taken individually and based on the baby’s behavioral cues observation in order to avoid impairment and prevent subsequent disabilities. marzieh hasanpour she entered each room of our unit and spoke with parents as if she had been in touch with them from the very first days of their baby. the parents didn’t understand a word because they didn’t speak english, but they understood heidi’s smile, her huge empathy, and her emotional touch. heidi taught me the perfect interaction… natascia bertoncelli she taught me not to just do my medical works, but be with the babies and families during each interaction, through observation of those subtle behaviors and reflection of those moments. chao-huei chen you planted the seeds and a community has grown and flourished! thank you heidi for the support, teaching and guidance that made us better professionals. são joão nidcap training center, porto, portugal it was a very special experience to have dr. als as a trainer, she “saw” us all, and spread inspiration and joy in those she met. her unique knowledge and guidance changed me as a professional, my mind and thoughts, my heart and hands in interaction with and care for the very tiniest babies, their families and my colleagues. unni tomren heidi will always be alive in our practices and we will always work to protect the mental and physical development of newborn and we will be the heard voice of newborn. samia ali mubarak i have only met heidi once in porto 2019 and i was lucky to have a little talk with her. i have never looked into a person’s eyes and felt i could read a story of that person. her eyes were full of power, so strong and at the same time so humble, supportive, respectful, full of joy and hope. jannie haaber heidi… said something like “well, hopefully the baby isn’t recovering from care, but instead looks better later because of the care.” that was an ah-ha moment for me. up to that point i had assumed that nicu care was stressful by nature and our goal was to lessen that stress. heidi opened my eyes that the care can be a nurturing, positive experience for all involved. jean powlesland 2022 • developmental observer • 47 opportunities and change doesn’t just happen, you have to work to create it. the likelihood that you might struggle should not deter you from continuing to support a cause you believe in. samantha butler heidi taught me that what is taken for granted should be questioned the most. birgit holzhüter listening to her lectures allowed me to see the babies in a different way. she gave me tools to work with babies and their families, always thinking about achieving the best neurodevelopment. rossanna figueredo with heidi, the relationship was everywhere even in the sharing of a cheese platter! nathalie ratynski heidi wrote an inspirational note that i will always cherish. she encouraged me to continue with “...gentle thoughtful persistence, empathy and discipline...and unshakable conviction...to keep moving mountains... [even if] it may appear those mountains shift ever so slightly.” diane ballweg we need to find a balance between that lifesaving action and individualized, supportive and protective developmental care. stina klemming heidi inspired me to always strive to widen and deepen my lens of perception, and to always find the strengths in any situation or person. jennifer j. hofherr heidi was one of the warmest people i ever knew. she was concerned that i was struggling alone in korea without being able to be with her in one space, and she became a compass for me to move forward. jungyoon lee i can still see her leaning over a fragile infant in the incubator, putting her hand around her tiny body. so much tender, love, respect, and knowledge in one touch. so much freedom in this restrictive action. ita litmanovitz i will do my best to continue to acquire apib accreditation and spread nidcap throughout japan as a way to appreciate her. noriko moriguchi heidi inspired me a lot because of her way of being, her simplicity, her empathy with people, her great sensitivity towards babies and parents of premature babies. mónica virchez remembrances the discussions with heidi and frank about newborns, families, society and the whole world… were always exciting and enriching. jacques sizun 48 • 2022 • developmental observer i heard heidi say to a room full of hundreds of nurses from all around the globe “it doesn’t matter what your unit, what those four walls look like, it is what you do within them that matters.” nadine griffiths heidi inspired me to reflect on a person’s needs to take the next steps kelly janssens she said to me… “kaye, sometimes you just have to act old.” i have used this wise advice on several occasions while traveling. for me it showed the character of heidi. kaye spence heidi was truly a champion for us clinicians. she encouraged me. she helped me change lives. and i loved her for that. kathi frankel the very first time i met heidi, i was captured by the kindness reflected through her eyes. she talked about the babies with such genuine warmth and expressed herself so precisely that suddenly everything made sense. being …exposed to her ideas made me feel that i have found my place, both as an occupational therapist and as a person. adi freund-azaria “you can always do more than you think” to find the strength in a fellow human being and build from there has changed my thinking and thus my life. nikk conneman my biggest inspiration is “the babies voice” that they have something to say, that i can hear their voice and see that i’ve understood and helped the baby always bring a smile to my face. eva jørgensen someone who not only changed my professional life but also helped me to be a better human being… to be a better mother, wife, friend, teacher, and nurse. she has many trainees all around the world, however, she spends time on each one of them separately. she had an individualized approach to each one of us. jila mirlashari “always find the next place of balance”... thank you heidi, for always guiding us towards that place of balanced regulation, while nudging us ever forward on our developmental journey. juzer tyebkhan, andrea nykipilo and the edmonton nidcap training centre canada ‘remember that you don’t have to be the one who reaches the top of the ladder when endeavouring to change things: it’s enough to have put your foot on the first rung’ gillian kennedy through the years i’ve known she always inspired me to be happy with every small change i could accomplish to make a better world for the newborn and his family. her inspiration and her ability to be happy with small changes will stay with me forever. ingrid hankes drielsma remembrances heidi as a person that, beyond everything, will stand for the babies and their families. i learned that there is no compromise possible on what is best for the babies…if you see the baby uncomfortable or overwhelmed, you have to speak up, even to people you work with everyday and it sometimes feels uncomfortable. but the higher goal, is their future! angeline parez 2022 • developmental observer • 49 i followed heidi for many years and at first i couldn’t understand nidcap. after her careful and detailed demonstration, i was moved and began to understand the preemies. i could read them after that. xiaojing hu our most sincere gratitude to heidi for helping us “see” the newborn infant’s strengths and sensitivities, for casting the light on the importance of involving the family from start in the infant’s care… her extraordinary way of “holding us” throughout this ever-continuing process. neonatal units at karolinska university hospital and karolinska nidcap training and research center, stockholm, sweden her warmth when she spoke about preterm babies, the wisdom to understand what happened to them, the dedication to stay near the bed, day after day, observing their behavior, trying to find the way to help them… that was amazing and totally encouraging. that inspired me to help families in the nicu. laura goldberg heidi taught me that every change, how small it seemed, is important, she taught me to be patient and try again. “always hold on to your passion” she said, “convince people with facts from your research”. joke wielenga i learned [from heidi] that everyone is important, different, useful, and capable of integrating teams. everyone should be given the opportunity to choose their role in each project... advice that slowly but continuously shaped my “know how”. hercília guimarães heidi was inclusive and appreciated the importance of parents because we work with the healthcare team to provide the most individualized and nurturing care for our babies. yamile jackson “i understand that my presence can be a stimulus for the team to show its best image, but…if they are now working in this way, they are showing us that they know it and that they can do it, that a change in the model is already taking place.” at that moment we were aware that…things had really changed. fátima camba, estrella gargallo, josep perapoch learning and teaching to listen to babies and families is the most important thing that we have to do when we take care of them. heidi’s work helps us to realize that and has impacted the way to take care of vulnerable babies everywhere in the world! delphine druart remembrances 50 • 2022 • developmental observer n i d c a p o n t h e w e b nidcap training centers – facebook pages the promotion of nidcap on facebook continues with new pages being added. over the past few months, we have seen these pages promote conferences, seminars and support sessions, helpful information, new publications, achievements, and celebrations of nidcap. please visit these sites and explore other information and achievements to help you celebrate nidcap. nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ 2022 • developmental observer • 51 n i d c a p o n t h e w e b nidcap blog nidcap.org https://twitter.com/nidcap https://www.facebook.com/nidcap https://www.instagram.com/nidcapfederationinternational/ https://www.linkedin.com/company/nidcap-federation-international/ https://www.youtube.com/user/nidcapfi https://nidcap.org/blog/ https://nidcap.org/ 52 • 2022 • developmental observer n i d c a p t r a i n i n g c e n t e r s americas north america canada edmonton nidcap training centre stollery children’s hospital royal alexandra site edmonton, ab, canada co-directors: andrea nykipilo, rn and juzer tyebkhan, mb contact: juzer tyebkhan, mb email: juzer.tyebkhan@ahs.ca united states st. joseph’s hospital nidcap training center st. joseph’s hospital and medical center phoenix, arizona, usa co-directors: bonni moyer, mspt and marla wood, rn, bsn, med contact: annette villaverde email: annette.villaverde@commonspirit.org west coast nidcap and apib training center university of california san francisco san francisco, california, usa director and contact: deborah buehler, phd email: dmb@dmbuehler.com children’s hospital of university of illinois (chui) nidcap training center university of illinois medical center at chicago chicago, illinois, usa co-directors: doreen norris-stojak ms, bsn, rn, nea-bc & jean powlesland, rnc, ms contact: jean powlesland, rnc, ms email: jpowlesl@uic.edu national nidcap training center boston children’s hospital and brigham and women’s hospital boston, massachusetts, usa director: samantha butler, phd contact: sandra m. kosta, ba email: nidcap@childrens.harvard.edu nidcap cincinnati cincinnati children’s hospital medical center cincinnati, ohio, usa director: michelle shinkle, msn, rn contact: linda lacina, msn email: lydialacina@me.com south america argentina centro latinoamericano nidcap & apib fernández hospital fundación dr. miguel margulies and fundación alumbrar, buenos aires, argentina director and contact: graciela basso, md, phd email: basso.grace@gmail.com oceania australia australasian nidcap training centre the sydney children's hospitals network westmead, australia co-directors: angela casey, rn, bn and kaye spence, am, mn contact: nadine griffiths, nidcap trainer email: schn-nidcapaustralia@health.nsw.gov.au europe austria amadea nidcap training center salzburg university clinic of the paracelsus medical university, salzburg, austria director: elke gruber, dgks co-director: erna hattinger-jürgenssen, md contact: elke gruber, dgks email: elke.gruber@salk.at belgium the brussels nidcap training center saint-pierre university hospital free university of brussels brussels, belgium director: inge van herreweghe, md co-director: marie tackoen, md contact: delphine druart, rn email: delphine_druart@stpierre-bru.be uz leuven nidcap training center leuven, belgium director: anne debeer, md, phd co-director: chris vanhole, md, phd contact: an carmen email: nidcaptrainingcenter@uzleuven.be denmark danish nidcap training and development center aarhus university hospital, aarhus n, denmark director: tine brink henriksen professor, md, phd co-director: majken grund nielsen, rn contact: eva jørgensen, rn email: auh.nidcaptrainingcenter@rm.dk france french nidcap center, brest medical school, université de bretagne occidentale and university hospital, brest, france director: jean-michel roué, md, phd contact: sylvie minguy email: sylvie.bleunven@chu-brest.fr french nidcap center, toulouse hôpital des enfant toulouse, france director: charlotte casper, md, phd co-director and contact: sandra lescure, md email: lescure.s@chu-toulouse.fr 2022 • developmental observer • 53 n i d c a p t r a i n i n g c e n t e r s germany nidcap germany, training center tübingen universitätsklinik für kinderund jugendmedizin tübingen, germany director: christian poets, md, phd contact: natalie wetzel, rn email: natalie.wetzel@med.uni-tuebingen.de italy italian modena nidcap training center modena university hospital, modena, italy director: fabrizio ferrari, md contact: natascia bertoncelli, pt email: natascia.bertoncelli@gmail.com rimini nidcap training center ausl romagna, infermi hospital, rimini, italy director and contact: gina ancora, md, phd co-director: natascia simeone, rn email: gina.ancora@auslromagna.it the netherlands sophia nidcap and apib training center erasmus mc-sophia children’s hospital rotterdam, the netherlands director: nikk conneman, md co-director and contact: monique oude reimer, rn email: nidcap@erasmusmc.nl norway nidcap norway, ålesund training center ålesund hospital, ålesund, norway director: lutz nietsch, md contact: unni tomren, rn email: nidcap@helse-mr.no portugal são joão nidcap training center pediatric hospital at são joão hospital porto, portugal director: hercília guimarães, md, phd co-director and contact: fátima clemente, md email: nidcapportugal@gmail.com spain barcelona nidcap training center: vall d’hebron and dr josep trueta hospitals hospital universitari vall d’hebron, barcelona, spain director and contact: josep perapoch, md, phd email: jperapoch.girona.ics@gencat.cat hospital universitario 12 de octubre nidcap training center hospital universitario 12 de octubre, madrid, spain director: carmen martinez de pancorbo, md contact: maría lópez maestro, md email: nidcap.hdoc@salud.madrid.org sant joan de déu barcelona nidcap trainer center sant joan de déu hospital barcelona, spain director and contact: ana riverola, md email: ariverola@hsjdbcn.org sweden karolinska nidcap training and research center astrid lindgren children’s hospital at karolinska university hospital stockholm, sweden director: bjorn westrup, md, phd contact: ann-sofie ingman, rn, bsn email: nidcap.karolinska@sll.se lund-malmö nidcap training and research center skane university hospital malmö, sweden director: elisabeth olhager, md co-director and contact: stina klemming, md email: nidcap.sus@skane.se united kingdom uk nidcap centre department of neonatology, university college hospital, london, uk director: giles kendall, mbbs, frcpch, phd co-director: gillian kennedy, obe, msc email: gillian.kennedy4@nhs.net middle east israel israel nidcap training center meir medical center kfar saba, israel co-directors: ita litmanovitz, md and dalia silberstein, rn, phd contact: dalia silberstein, rn, phd email: dalia.silberstein@clalit.org.il asia japan japan national nidcap training center seirei christopher university, shizuoka, japan director: tomohisa fujimoto, pt co-directors: kanako uchiumi, rn, mw, noriko moriguchi, msn, rn, phn, ibclc and yoko otake, rn contact: tomohisa fujimoto, pt email: fusan.mail@gmail.com www.nidcap.org 2024 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 aim to evaluate the immediate physiological and behavioural responses of infants during routine nurse-delivered caregiving in the surgical neonatal intensive care unit (nicu) methods a prospective observational study was conducted in a surgical nicu. paired physiological and behavioural data were collected to evaluate surgical infant responses during routine nurse-delivered caregiving (diaper change). continuous heart rate (hr) data were reviewed to explore variation in the mean hr pre-, during-, and post-nurse-delivered caregiving. physiological stress was defined by the study team as a change in the hr of 10bpm or more.1 videos of infant caregiving were captured by a web camera. dedicated software combined audio-visual and physiological data. two nidcap certified professionals independently scored the video recordings, using a study-specific behavioural observation tool consisting of 43 items: 6 measure infant state; 19 measure stress responses; 7 measure self-regulation; 11 measure caregiver-support. videos comprised three epochs: epoch one and epoch three preand post-caregiving of 10 minutes each; epoch two nurse-delivered caregiving of variable timing. a tick was recorded when a behaviour, state or support was observed, and item scores were summed. inter-rater reliability was calculated using the intraclass correlation coefficient (icc). results forty infants participated in the study, physiological data was analysed for 40 infants and behavioural data was scored for a sub-group of 10 infants. the sample had a mean gestational age of 36.9 weeks (sd 2.2) and participated in the study at a mean of five (sd 2.9) days postoperative. twenty-two infants (55%) had gastrointestinal (git), ten (25%) cardiac, and eight (20%) respiratory/oesophageal surgery. physiological results a total of 74,880 data points were reviewed. all groups showed significant changes in heart rate (hr) between pre-caregiving and during caregiving; mean change (bpm) of 15.4 (sd 13.3) in git, 6.3 (sd 4.0) in cardiac, and 16.1 (sd 9.2) in respiratory/ oesophageal groups. effects of caregiving were seen beyond the caregiving period across all groups with hrs not returning to the pre-caregiving baseline within 10 minutes of caregiving completion. behavioural results four-hundred and thirteen minutes of video data were analysed; epoch one 106 minutes, epoch two – 207 minutes, epoch three – 100 minutes. the icc’s were good to excellent across all components of the behavioural assessment tool (table 1). the most frequently observed states, stress, and self-regulation behaviours during caregiving for the sub-groups are behavioural and physiological responses of infants post-surgery during nurse-delivered caregiving griffiths, n 1,2, laing, s1, spence, k1,3, foureur, m4, popat, h1,5, james-nunez, k1, sinclair, l2 1 grace centre for newborn intensive care, the sydney children’s hospital network (westmead) nsw, australia, 2 university of technology sydney, nsw, australia, 3 western sydney university, nsw, australia, 4 university of newcastle, nsw, australia, 5 university of sydney nsw, australia table 1: intra-class correlations for scale components of the observational tool, by epoch scale component epoch 1 pre-caregiving epoch 2 caregiving epoch 3 post-caregiving infant state 0.72 0.71 0.53 stress responses 0.91 0.84 0.78 self-regulation behaviours 0.90 0.90 0.74 icc agreement grading: poor <.40, good to moderate .41 to 0.75, excellent >.762 doi 10.14434/do.v17i1.37079 10 • 2024 • developmental observer a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 reported as median scores. for infant states: git infants drowsy/alert/crying (4.2); cardiac infants drowsy (5.5). stress responses: git infants extend legs (8), splay fingers/toes (6), squirm (6); cardiac infants splay fingers/toes (8) and squirm (7.5). self-regulation behaviours were similar for both groups; git infants hand to face (5), suck/foot clasp/leg brace (3); cardiac infants hand to face (4), suck/hold on/leg brace (3.5). the most offered support during caregiving was, in descending order supportive holding, voice, patting/stroking. relevance to nidcap this research provides nidcap trainers, nidcap-certified professionals, bedside clinicians, and families with information to support infants requiring surgery in the neonatal period and specifically the application of developmentally responsive caregiving. conclusion to our knowledge, there is no published research on surgical infants’ physiological and behavioural responses during nurse caregiving. we found that infants post-surgery demonstrate physiological stress during nurse-delivered caregiving. differences were observed between groups and may represent the differing physiological effects of congenital anomalies. it appears that infants post-surgery express similar repertoires of behavioural stress cues and self-regulation behaviours. ongoing analysis of the study sample will add to these preliminary results and the findings may assist bedside clinicians. references 1. allinson lg, denehy l, doyle lw, eeles al, dawson ja, lee kj, spittle aj. physiological stress responses in infants at 29-32 weeks' postmenstrual age during clustered nursing cares and standardised neurobehavioural assessments. bmj paediatr open. 2017;1(1):e000025. doi: 10.1136/bmjpo-2017-000025. https://doi.org/10.1136/ bmjpo-2017-000025. 2. fleiss jl. (1971). measuring nominal scale agreement among many raters. psychological bulletin, 76, 378-382. nidcap federation international board of directors and staff 2024 president deborah buehler, phd nidcap master trainer apib trainer director, west coast nidcap and apib training center email: nfipresident@nidcap.org vice president dorothy vittner, phd, rn, faan senior nidcap trainer west coast nidcap & apib training center email: dvitt8@gmail.com co-treasurer gloria mcanulty, phd national nidcap training center email: gloria.mcanulty@childrens.harvard. edu co-treasurer jennifer hofherr, ms, otr/l, cnt national nidcap training center nidcap trainer children's hospital of university of illinois nidcap training center email: jennifer.hofherr@nationwidechildrens.org secretary jean powlesland, rn, ms nidcap trainer director, children’s hospital of university of illinois nidcap training center email: nidcapchicago@gmail.com fatima clemente, md nidcap trainer co-director, são joão nidcap training center email: clemente.fatima@gmail.com mandy daly, dip. h diet and nutrition, acii, dldu family representative, dublin, ireland email: mandy.daly@yahoo.co.uk jennifer degl, ms family representative, new york, usa email: jenniferdegl@gmail.com dalia silberstein, rn, phd nidcap trainer co-director, israel nidcap training center email: daliasil1960@gmail.com apoorva sudini, bs healthcare associate pricewaterhousecoopers, new york, ny email: asudini@outlook.com charlotte tscherning, md, phd division chief of neonatology oslo university hospital, norway email: charlottecasper66@gmail.com juzer tyebkhan, mbbs nidcap trainer director, edmonton nidcap training centre email: juzer.tyebkhan@ albertahealthservices.ca staff rodd e. hedlund, med director, nidcap nursery program nidcap trainer email: nidcapnurserydirector@ nidcap.org sandra kosta, ba executive director of administration and finance email: sandra.kosta@childrens. harvard.edu founder of the nidcap federation international, inc. heidelise als, phd 1940-2022 nidcap founder, past president 2001-2012 senior nidcap master trainer senior apib master trainer director, national nidcap training center, 1982-2022 https://doi.org/10.1136/bmjpo-2017-000025 https://doi.org/10.1136/bmjpo-2017-000025 2023 • developmental observer • 9 a b s t r a c t — n i d c a p t r a i n e r s m e e t i n g 2 0 2 3 background about the lebanese crisis developmental care (dc) was established in 2013 at the level iii nicu of the american university of beirut medical center in lebanon through the developmental care and early intervention program (dceip) led by a nidcap certified team of neonatologist and nicu nurses. for the past three years, the provision of dc has been markedly affected by the worst economic and financial crisis amid the covid-19 pandemic followed by the massive beirut blast "beirutshima". this multilayered crisis is endangering the well-being of lebanese citizens including nicu babies, their parents, and their care providers. admitted infants are unable to receive standard care due to a shortage of certain medications and medical supplies and increasing healthcare costs. parents are struggling to pay for transportation to visit and to pay for hospital bills. healthcare providers are working with minimum staffing due to the migration of healthcare workforces. aims to describe the practice of developmental care during the lebanese multidimensional crisis including the covid-19 pandemic at a tertiary healthcare center. findings amid this crisis, the dceip team drafted policies to standardize dc practice. weekly dc observation rounds were maintained, a standardized dc note was embedded in the electronic health record (ehr) and recommendations for dc were shared with nurses and families. infant positioning was monitored daily using the infant position assessment tool (ipat) score on all patients. infants’ positions were supported by "zaky hands" that were generously donated by the nurtured by design following the beirut blast. the team engaged nicu nurses in quality improvement projects and task forces addressing components of dc such as having a daily "quiet time" for at least one hour daily in each nicu pod. mothers and fathers were actively supported in their skin-toskin practice at each opportunity. to sustain the provision of dc in the unit, the dceip team worked on building the capacity of the remaining nicu staff by offering refresher educational sessions and tips on dc. they also organized educational sessions for nicu parents that shifted from in-person to online format for those unable to reach the hospital whether because of covid restrictions or high fuel prices. the parents were satisfied with the individualized sessions which were tailored to fit their needs. a web-based interactive course was developed for the continuous education of nurses and doctors. they liked the content and the pace of the course which was given online and according to their schedule. the dceip team was invited to participate in national online webinars focused on developmental care. all the aforementioned interventions were done at no additional cost. the multilayered lebanese crisis taught us how to adapt and customize individualized interventions for infants, families, and staff without resources. the future plans for the unit nidcap certification and training of a nidcap trainer to establish a training center had to be halted because of financial constraints. relevance to nicdap how to adapt in a low resource and crisis setting. conclusion developmental care becomes even more relevant during a crisis. it tackles all aspects of nurturing care in a humanitarian setting. practice of developmental care during multilayered crisis situation: lessons learned from lebanon doi: 10.14434/do.v16i1.35770masri s, abdel nour g, chayto s, haidar m, saad a, youness n, charafeddine l american university of beirut, lebanon. references: 1. smith vc, hwang ss, dukhovny s, young s, pursley dm. neonatal intensive care unit discharge preparation, family readiness and infant outcomes: connecting the dots. journal of perinatology. 2013, 33, 415–421 2. https://newborn-health-standards.org/wp-content/uploads/2021/07/final-8.7-infantfamily-cdc_parental_involvement-ita.pdf 3. hua w, y weichao; simoni, jm; yan, j, liping j. parental readiness for hospital discharge as a mediator between quality of discharge teaching and parental self-efficacy in parents of preterm infants. journal of clinical nursing. 2020, july;29 (19-20) 3754-3763 4. barnes cr, adamson-macedo en. perceived maternal parenting self-efficacy (pmp s-e) tool: development and validation with mothers of hospitalized preterm neonates. jan research methodology. 2007, 60. 550-560. 5. pedrini l, ferrari c, ghilardi a. psychometric properties of the italian perceived maternal parenting self-efficacy (pmp s-e) journal of clinical psychology in medical settings. 2019, jun;26(2):173-182. (references continued from p. 8) sponsor of the 33rd nidcap trainers meeting